This is Natalia’s story, as told by her mother, Kari. It’s a story of hope, and of faith.
I never dreamed of having a ‘large’ family, until our first child was placed in my arms. I think that was the turning point – from then on, whenever we found out we were expecting another little one it was with great joy, and the knowledge that there would be some really bad days of sickness!
Natalia was our fourth child, and the pregnancy was ‘normal’ when in week 5 I began my routine all day sickness. This time, however, it seemed to be magnified and I lost weight, became dehydrated and my doctor was concerned that I would either need to be hospitalized or take anti-nausea drugs. I took zofran, a medication that many other pregnant ladies have also taken, but I will always wonder if this was the cause of Natalia’s problems.
Our first week ultrasound in week six confirmed that everything was fine. Meanwhile, I did all the blood work and that too showed everything was pointing to another routine pregnancy. The doctor ordered another ultrasound when I was in my 15th week and that too came back completely normal. It also confirmed that we would be adding a little girl to our family in late February or early March 2010. What excitement! Our children could not wait to welcome home this little one and were already wondering why they had to wait so long!
Month five I was starting to feel better. In late Nov 09, we travelled from our home in Puerto Rico to Georgia to attend my sister-in-laws wedding. During this trip I was in week 23/24 and I began to have some regular contractions. The contractions were not foreign ot me, I had experienced pre-term labour with several of my other pregnancies. It was different in that it was happening six weeks earlier than it had begun in my other pregnancies. It was also strange that belly in this week seemed larger than ‘normal’. I had to sister-in-laws who were expecting babies at around the same time as we were expecting ours and it seemed that my bump was pretty big. We laughed it off thinking it was probably because it was our fourth child. In retrospect we know now it was probably larger due to the polyhydraminos that was beginning at this stage.
When we arrived home, I went to my 6 month doctors appointment and I had gained 10pounds in one month. Unheard of, for me. The nurses got on my case and wondered if I had been eating. The doctor wasn’t concerned though because of the amount of weight I had previously lost. He said ‘you’re fine’. I told the doctor about my random contractions and he advised me to take it easy. From this week onwards I measured larger that the week I was in. I would often comment to my husband about how my belly just seemed to be growing and growing – meanwhile the tests and blood-work were coming back normal.
Because I was having irregular contractions my doctor wanted to see me every two weeks and so at 28 weeks he checked me for dilations and found I was dialted, so I started on Procardia in this week and tried to take it easy. At my 30 week check-up the doctor was very concerned because I had dilated more and he also gave baby Natalia a steroid shot to boost her lung development in case of labour. He also ordered a sonogram to see what Natalia’s approximate size at the time was, in case my due date of March 3, 2010 was incorrect.
We had a cousin that offered to come and help us with housework and childcare over this time of procardia / bedrest / pre-term labour. She came and was truly one of God’s most gracious gifts during the time to come. Her compassion for our ‘valley’ had a cementing affect in the love we hold for her in our hearts.
In the medical world of Puerto Rico, here is where the ‘laid back’ culture adds it’s own dimension. When I went to get a sonogram I found that all of the sonogram / ultrasound offices were closed for two weeks over the Christmas holidays. Sonograms on the west end of our island are not performed at the office, nor is the bloodwork. These servies are done by different offices and the patient is responsible for the transporting of the results back and forth from office to office. Nevertheless, the Dr didn’t feel there was any urgency to get the ultrasound, and so I waited.
January 12, 2010 the day after the ultrasound office re-opened I was in there, in week 32, waiting to see our little girl once more. The ultrasound technician was exceptionally caring and talked about her own birthing experiences and the difficulties she had, and so on. She did not act like anything was wrong, but I remember thinking that I had never had an ultrasound last that long before. Little did I know this ultrasound would change our lives forever
Later that same Tuesday afternoon, our doctor called us and said he needed us to see him tomorrow, and that the ultrasound did not look good for Natalia. She had pleural effusions on her lungs. I remember thinking, ‘what are pleural effusions?’ I had this awful sinking feeling as I walked down our back steps to share the news with my husband.
Wednesday, January 13 we talked to our Doctor and found that Natalia indeed had Hydrops, and that she weighed approximately 6 pounds. The Doctor was sending us to the specialist – 3 hours away in San Juan to see if we could find the cause. I was measuring 38 weeks at this time.
Early the next morning, Jan 14, we left for San Juan with blankets and an overnight bag in case I’d be admitted to a hospital in San Juan. The specialist found a possible heart defect that was the cause of the hydrops, and then that afternoon sent us to an infant heart specialist. He confirmed the diagnosis and it was the general consensus that there was no experience with the case such as ours and the our best chance would be to find a doctor in the states.
Our dear doctor was on the phone as we drove home from San Juan that night trying to find us a group of specialists to take our case. He found them at MCG in August GA, A half hour from my husband’s home area.
All during this week my belly was growing larger and larger, becoming more and more painful and the contractions were ever-present even while laying down and in spite of the Procardia.
January 15, 2010 We wept as we left our three children behind with our cousin and my parents and headed back to San Juan to the airport. We had a straight flight to Atlanta and I took a double dose of Procardia and God provided an empty seat next to us so as I could lay down for most of the flight
January 16, we arrived back at my husband’s parents home shortly after midnight. I couldn’t sleep much due to fluctuating blood pressure and contractions all through the early morning and finally at 10am the contractions were regular. After a time in prayer we left for the hospital.
I was admitted straight away. I couldn’t believe the difference in care between PR compared to GA! The staff at MCG were wonderful! They started a magnesium drip (that wasn’t so wonderful!) right away to sop the contractions but after several hours the contractions wouldn’t stop so they removed the magnesium – and the lord stopped the contractions! He is so much bigger than medicine! Since I was dilated to 5, and leaking fluid I was on complete bed rest. From this time on I started retaining fluid which was later confirmed as Mirror Syndrome. (The mother reflects the baby’s problems).
We waited for Natalia’s arrival for ten more days, and I became more sick as we both began to carry more fluid. All during this time I believed that we were in the best possible situation for her to make it. I guess because I was sick myself, and everything had happened so quickly that I didn’t process the possibility of death. We knew her heart condition was repairable, and that it would depend on her lungs as to whether she would survive. Meanwhile, our other children remained in Puerto Rico and we talked with them via skype and were struggling with how far from us they were.
In the last four days before I delivered, the skin on my lower abdomen was breaking down and there were pockets of fluid that made the skin red and inflamed. The doctor said I was measuring as if I was carrying twins full term – approximately 45+ weeks. They informed us that I would need to have a C-section as they couldn’t tell Natalia’s size. They were concerned that her head would be delivered, but that her chest would larger and she would not be able to be delivered quickly
Labour began on the evening of Jan 24th, and because my belly was so tight I couldn’t tell if I was contracting. It just seemed like a little more pressure. I called in the nurses and they put me on the monitor and went out. Pretty soon they were back in and said I was contracting every two minutes and would need to be checked. I was dilated to 7. There was some intense time following. I knew my previous pregnancy I had dilated from 8 to 10 in 20 minutes. A nurse was on the IV pole squeezing the bag to get enough fluid in before the C-section, and then I was wheeled away and my dear husband was left to change before meeting me in the operating room
I expected to be sick – but I had a wonderful anaesthesiologist who was very kind and patient with my questions. I felt peace in the middle of complete uncertainty. My husband was a stable rock who was there with me through it all.
Natalia was born at 1:14am on January 25 on her great grandpa’s birthday and she was surrounded by her doctor and nurses and she lived a mere 20 + minutes. It seemed like only a few precious moments. We heard the ticking of her heart on the monitors and after awhile, the doctor said “try resuscitating her,” and then, “try again.” After which he then turned to my husband and said, “I’m sorry, I can do no more.” My husband then held her and brought her over to me for momma’s first kiss.
Life after a death…grief without the comfort of an Everlasting Father and the hope we have of being united one day with dear Natalia would be impossible. But, with God all things are possible!
Wyatt’s story has touched me in a way that is somewhat different to others. While the depth of loss, and longing is familiar to me, it’s the way his mother Delanie talks of her anger, and deep sadness after the loss of her son that resonated within me. It’s a hidden side to grief after losing a baby – the inability to be around children the age that your child should be. It takes a lot of time to move forward from, and for now I just hope that having this story out there for people to view and comment on will help not only someone as yet unknown to me, but also the family of beautiful and brave Wyatt – in particular his mother, Delanie.
I was one day away from being 35 weeks. I had felt my son’s movement less and less in the days prior but I thought he was growing and running out of room. I had grown quite a bit in the last month. I was very uncomfortable and just felt “wrong” and different than I did with my 1st son. I kept telling people how this last of pregnancy was so ‘different’. I ate ice-cream and thought for sure this would make him move. No movement.
The next morning after some thought I decided to call labour and delivery. They advised me to come in and have a stress test. I went in and they hooked me up and there was his heartbeat. I was so relieved to hear it and know everything was ok. Little did I know it wasn’t. They decided to hook me up to an IV and to do an ultrasound.
I knew something was wrong when the ultrasound tech got really quiet. In my gut I knew it. Less than 10 minutes after my ultrasound the doctor rushed in and told me they had to do an emergency c-section NOW. The baby had fluid around his lungs and heart and might not survive.
I thought at the time this was the worst thing that could have happened. They prepped me for my c-section and were talking about sending me to San Francisco. As they called SF to see if they could take me, my sons heart rate and my own heart rate kept dropping. They had to do the c-section now.
They performed the c-section, and it then took 20 minutes to revive my son. At the time, I had no idea. He was given a very low chance of survival. They transferred us to the Walnut Creek Kaiser that night. I didn’t get to see him that night. For the next 2 days they did everything possible for him. He was at the maximum limit for drugs and the respirator. His heart rate had dropped so low at times that his poor little face was blue and I thought he was leaving us. The doctors gave us the option of stopping intervention, but I could not pull the plug on my son. It was not something I was prepared to live with for the rest of my life.
My family and I went to the chapel to pray but as we got there a nurse came running and told us to get back up to the NICU. By the time I got there they were performing CPR trying to resuscitate him. I knew he was already gone and the CPR was just hurting him so we asked them to stop.
My son made the decision to go to heaven so we did not have to. We still have no idea why he contracted Hydrops. Tests are still being done and there are still no conclusive answers. I do not think I will ever find out why. I had an ultrasound less than one month prior to his birth because I measured so big. They did not find anything wrong and they told me he was just a big boy.
He was so sick. At 5 weeks premature he weighed 9 lbs 2.7 oz. and 21 inches long that is 4-5 lbs of fluid that he was carrying with him, and consequently he was too beautiful for this world. While I was pregnant I had a crazy glow – maybe it was because I was carrying an angel. Not a day goes by I don’t think of him and I don’t think I’ll ever be the same. I am angry, hurt and just so sad.
My first born son is the reason I keep going each day because he still needs me. Even though nothing really could have been done to help him if I gone to the hospital I can’t help but blame myself. The ‘what-if’s’ can kill you.
My sister had a baby two weeks prior to Wyatt’s birth. I now have to watch my nephew grow up and think “that’s what Wyatt would have been doing” I can’t bring myself to hold him and I can barely look at him. I have anger towards pregnant ladies and newborn babies. I think “why me? Why not them?” It’s just not fair. I know that I need to go and talk to a counsellor, to help me deal with these feelings and these emotions.
The number is on the fridge, I just can’t bring myself to call it yet. It’s like tearing off a bandaid to have to tell the story over and over. It’s taken me months to even be able to write this.
Rest in Peace, my angel baby Wyatt Nathaniel. 27 / 01 / 2011 – 29 / 01 / 2011
Melissa is mum to Alaina, the beautiful girl you will read about shortly. But first I want to take this opportunity to thank each and every hydrops parent who has come forward with their hydrops fetalis story to share with the world. These stories are highly personal, and highly emotional. It takes a certain level of bravery and courage to recount the days where you were told your baby would die, and the outcome of those predictions. Indeed I have mums who tell me often they would love to share their story but simply cannot go back to that place, emotionally, to write it. I respect that – but I only post stories that mum’s have written themselves. After all, I get to share it, but it’s their story to tell. Thank you to each and every one of you who reads these posts, and comments on them. You have no idea what it means to the mum’s and their families to know their precious babies have a voice.
I still rememberJanuary17th 2010 like it was yesterday. I made an appointment, because for some strange reason all 7 pregnancy tests were coming up positive. It took the doctor bluntly saying “You’re pregnant” for it to finally sink in. Planned or unplanned I quickly fell in love with the idea of being a mother. As I walked to my car I had a sudden overwhelming feeling of love for this little life growing inside of me. It’s the kind of love you dream about.
My 18 week ultrasound was fast approaching and my excitement level was through the roof. I was about to find out if it would pink or blue! I walked into my 18 week appointment to find my doctor was on vacation and I was scheduled to see another doctor. No worries I thought. Well, to my surprise I ended up arguing with the doctor. He told me I needed to wait 2-3 more weeks for my ultrasound. Something compelled me to fight that day and he ended up compromising for 19 weeks. I’m thankful every day for the beautiful angel that watched over us that day.
I decided to take my mom with to my ultrasound on May 3rd because if anyone was more excited than me it would be “grandma.” We went in and everything seemed routine. I thought it was a little strange that the ultrasound tech seemed to focus on one area, but what do I know about ultrasounds. I shrieked with joy when I found out I was having a girl!! From day one I was secretly hoping for a little girl. The tech said nothing and sent us home with a single picture. I couldn’t have been any happier.
On May 5th 2010 I had a follow-up appointment. I was excited to learn my doctor was back from vacation but as soon as I saw her I knew something was wrong. The happiness I felt instantly melted away when she said, “We found some abnormalities and your baby is very sick.” I burst into tears as she told me Alaina had excess fluid in her chest cavity and she might not make it. I was sent home and scheduled for an appointment with a maternal-fetal specialist the very next day. I remember walking through the waiting room full of happy pregnant women. I quickly glanced up as I passed through and saw every eye in the room looking at me with sympathy. Hard to believe how fast your whole world crumbles. Just minutes before I was one of those happy pregnant ladies.
I don’t remember the drive home or much of the night but I know it was filled with tears. I made the mistake of searching the internet for answers. I found very little but what I did find was not good. I spent a few hours looking at websites and images that no mother or innocent baby should ever have to endure.
I arrived at the specialist 30 hours after the heart-wrenching news. The longest 30 hours of my entire life! When I was finally called back I was led into this little room with tissues and books about chromosome abnormalities on the table. I could sense that this was some sort of “bad news” room. I wondered to myself how many tears had been shed in this tiny little room. Shelly, the genetic counselor said she wanted to discuss my baby’s condition before we went any further. I corrected her in a shaky small voice, “Alaina, Alaina’s condition.” She told me how severe the situation was and talked about all the chromosome abnormalities that could be causing the fluid. She cried with me and my mom as she told us the news. I asked her what her chance of survival was. Her reply was devastating, “Not good and no one would judge you if you decided to terminate.” I told her that was not an option. No matter the situation she was my little girl and I loved her. After a lot of tears shed by all of us I told her my plan. I wanted to move on with the pregnancy and do anything medically possible until God called on Alaina. I needed a moment so I excused myself and went across the hall to the restroom. I locked the door and fell to the floor in tears. I started begging and pleading with God “Don’t take my little girl, please God don’t take my little girl” I asked Alaina to fight, “I will do anything and everything for you…I love you…I need you…don’t leave me…I will give you the best life…you just have to fight for it.”
We went in for a detailed ultrasound with the doctor. He told us that the fluid was putting so much pressure on her heart and lungs that it was causing the heart to slow. Her heart couldn’t circulate the extra fluid so it was building up in other parts of her body. He finally put a name to her “condition” - bilateral pleural effusion and hydrops fetalis. The doctor felt that her life was less than 12 hours from slipping away. It was time to drain the fluid off ASAP. He inserted an amnio needle into Alaina’s chest and drained off 40 ml’s off of her tiny 7 ounce body. She automatically started wiggling all over! He drew out some amniotic fluid for genetic screenings. I was sent home and told to return in four days to recheck for fluid. He said, “If the fluid returns at least we brought her health up for the possibility of a shunt placement.”
I felt confident as I went in on the 10th. She had been kicking up a storm. Sadly, the ultrasound showed the fluid had returned. They decided to drain more fluid off and send me two hours away to get a thoracoamniotic shunt placed in Alaina’s chest. The results from the amniocentesis showed no chromosomal abnormalities and the fluid pulled from her chest was lymphatic fluid which pointed to a possible cause, congenital chylothorax .
The shunt surgery was scheduled for May 13th. I was so scared but also very hopeful that they would tell me “The fluid is gone! She’s going to be just fine!” …I did not hear that. I received a very extensive ultrasound that showed the fluid was once again returning. The ultrasound also included a two-hour echo cardiogram that thankfully showed no heart abnormalities. I was sent all over the VERY large hospital meeting with several doctors and specialists. Sadly they were all telling me how grave her situation was and they did not expect her to survive. That was until I met with the fetal surgeon!
He explained that he was going to be placing a small shunt into Alaina’s chest in hopes that it will continuously drain the fluid and carry her to 32 weeks. He went on to say that there are many risks involved but it was her only chance. She would need at least two draining’s a week to do what one shunt could accomplish. He had a confidence that gave me hope.
As they prepped me for surgery I had nervous shakes and panic attacks. I was not scared of the procedure itself but the safety and health of my sweet Alaina. I would gladly take any pain or discomfort for her wellbeing. I received a spinal block as I cried in the arms of the nurse who was holding me. She talked to me and calmed me as they were struggling with the needle…I will never forget how kind she was. I was laid flat and strapped to the table. I was having severe shakes from the spinal medicine and I’m sure nerves. My teeth were chattering loud they kept piling blankets on me thinking I was cold. My sister held my hand and tried to distract me from watching monitors. I had a sheet blocking the doctors and fetal monitors. All I heard were the voices of the doctors and the strange pressures on my belly. I felt a large pop sensation…and I screamed out “oh my god! My water broke!” I heard a voice through the sheet reassuring me that it was just the needle going through the layers of skin. I passed time by praying, talking to my sister and clutching my angel pendent in my left hand. Finally, the shunt was in. They checked her heart rate and they all cheered! It was a success. I burst into tears as I heard her heartbeat.
After 24 hours the fluid was gone from her forehead, neck and belly. There was a small pocket of fluid next to the shunt but the surgery was a success! Alaina received nerve-racking weekly scans to monitor the shunt and her health. I was a nervous wreck each week as I entered the tiny ultrasound room. The fear of losing her was so strong I always took a detour to say a little prayer in the restroom. To everyone’s surprise the hydrops never returned! She had a small pocket of fluid next to the shunt until about 28 weeks…than all the fluid miraculously disappeared! The doctors were optimistic that the chylothorax had healed itself!
I became a momma to a beautiful completely HEALTHY little girl on 9/27/10. That’s right…healthy! Alaina came screaming into the world weighing 6lbs 10oz at 4:35pm. The shunt was in place for an astonishing 20 weeks and carried Alaina to her due-date birthday! I couldn’t be any happier. We fought every day to meet each other and I’m eternally grateful for her strength. She is the strongest, bravest person I know. It was one heck of a rollercoaster but I would fight our battle a million times over…anything for my little lamb.
This is part two, of the Miracle of Marley story. To read part 1, please go here.
Monday 31st August, 2009
I woke up feeling awful, I’d had virtually no sleep. I went to the loo, went to wash my hands and HOLY SHIT, elephant lady is staring back at me! I’m swollen, from head to toe! My face, my hands, my arms, my legs my feet. Everywhere. I get straight on the phone to RWH, and they tell me to get to the local hospital. I get in there, my BP is taken and it’s very high. The measure my tummy, it’s measuring at 27 weeks, but I’m only 18. I do a pee test and am waiting for the results when a doctor comes in, looks me up and down and says “It’s not that bad, you can go home”. Until he sees the results of the test which shows I have A LOT of protein in my urine. Protein that should not be there. Suddenly, I have to be admitted because he thinks I’m developing pre-eclampsia. They take bloods, and hours later the results come back that my Protein levels are low, my blood count is low and the doctor will come in later to explain. Meantime, I’ve requested a scan to check on Marley three times, I knew that the swelling could have been from too much amniotic fluid. We were prepared for this possibility, and I really wanted them to check it out. We never did get a scan. Hours later the doctor sends me home. He told me to take iron tablets because I’m anaemic, and sent me on my way. He never explained what “low protein” would mean, or what could be causing it.
Tuesday 1st September 2009
Woke up, and the swelling is worse. Far, far worse. Oh Crap! By this time I can’t keep food down, I am vomiting almost non stop. Even with my awful all day sickness I have never been this sick, and I am scared. I am struggling to breathe, and I have this very odd pain in my back. We go back to the hospital but not before I go starving and fasting to my glucose test. I have to be tested early because I developed GD while I was pregnant with Harper, and my placenta is massive and swollen. On admission to hospital my BP was high, there was a lot of protein in my urine and my old Obstetrician from when I was pregnant with Harper is on call. The midwife calls him, he tells her I must be admitted and that he will come and see me. He comes into the room, sees a massive lump on my neck which could indicate my thyroid is now failing. My BP was back to normal by this point, but the swelling was just ridiculous. I could roll out of hospital. I stay overnight, a cleaner comes in first thing in the morning and asks me how I am. I say tired, there were a lot of babies last night. She asks me where mine is….. Ouch.
The doctor comes back, my BP has been normal overnight so I am discharged. A nurse laments with me about the shocking lack of answers I have been given, and on request looks up my GD test results. I have developed gestational diabetes. Fantastic.
Thursday 3rd September 2009
We went to Randwick. I had been told to “pack a bag”. We get there and are taken into a familiar ultrasound room with a wide eyed student, the professor and two other doctors. This is starting to remind me of a Greys Anatomy episode. She pops on the gel, and there is our girl, with her massive hygroma, only now her entire body is swollen. She measures the amniotic fluid and surprisingly it’s normal! The professor does a detailed scan, and they mutter to themselves in their smart people language. We had been warned they would do this, it’s ok, we’re watching our brave baby on the screen. They take their measurements, they are all normal. She has a massive amount of fluid in her chest, it’s pushed her heart to a side. Her hygroma now stretches all the way around to her forehead, but we can still see her beautiful angelic face. They monitor closely the movement of her limbs. At one point they think they may have found the problem, but it turns out to be just that her movements are restricted from the sheer amount of fluid she is carrying. Her beautiful little hands are so swollen, just like her mummy’s. The verdict is in.
There is no improvement. If anything there has been advancement of the illness. He is apologetic at having to share this news with us, but we saw the scan, we knew it was coming. They are still believing it’s a rare syndrome. But then comes the clincher – this story has changed directions. Now they are concerned for Marley’s health, and mine. I didn’t take much notice of what he was telling me to start with. He told me I am developing signs of pre-eclampsia, but at this stage it hasn’t developed as my BP is staying quite stable. It’s that, or mirror syndrome. Mirror syndrome, or Triple Odema, or Ballantyne Syndrome is where the Maternal mother begins to “mirror” the symptoms of the unborn child. In my case, I was swelling where Marley was swelling and it was getting dangerous.
At this stage, he introduced the notion of possibly having to choose who to save – Marley, or me. This was not a notion I was willing to entertain. At no point would I put my life ahead of that of my unborn daughter. He said I was at risk of my kidneys failing, my placenta separating and poisoning me. He said it could get to that stage before Marley was a viable age. The only cure is delivery, so she would likely survive the birth, and die shortly after. They wanted me to choose me.
No Fucking Way.
So I am now on pre-eclampsia watch, and have to return to hospital should anything at all change. I also have to have my blood pressure checked every couple of days. We are booked in on the 24th of September to see them again, and to see the paediatric cardiologist. And, after many, many tears we had to realize that if it came to the decision, I had to choose life for me. I have two children, a husband, and family that need me. So again, we wait.
Tuesday 8th September 2009
Went to my GP today to have my blood pressure, weight and urine checked. Told him I’ll be coming to see him now between my visits at the hospital because my Obstetrician here is an idiot. He’s good with that. He took my blood pressure and it was perfect! WooHoo! My protein levels are still high, but no higher than earlier. He weighs me. I have gained twelve kilos despite vomiting multiple times a day. He props me up and measures my belly. I measure at 24 weeks, I’m only 19. We use the Doppler, and immediately hear the “thump Thump Thump” through the speaker. Cheeky girl! On my way out I’m on cloud nine. The news isn’t great, but it’s not worse, which is great. My phone rings. It’s the doctor from Randwick, they got my full urine analysis from last week. The protein they measured should be about 30, mine is 500. She wants me to come in and discuss, now, and is hinting that it might be time to start thinking about ending the pregnancy. I refuse. I am not going to be the one who ends Marley’s fight for life. She said I need more blood tests, to check my liver and kidney functions are still ok. I’m fine with that, that can be done here.
A few hours later I have a message left on my phone. She has discussed my case with the rest of the Maternal Fetal Medicine team, and they are not comfortable leaving me here for so long. They need me to come up. I have an appointment for Thursday the 10th of September and they will re-scan Marley then, too. I have no intention of letting them deliver her to death, not now. I will not be irrational, but at the moment they “think” I “might” be in danger. But there is no proof. That is not reason enough to end this, not now.
Thursday 10th September, 2009
When the hospital staff saw me, they were stunned. Nobody could believe how much swelling I had, my legs and feet were so bad I could barely walk. We were taken to ultrasound, to check on Marley. Nobody told me until much later, but they expected her to have already slipped away. What we saw on that scan nearly broke my heart. She was so swollen she could not move, the kicks I had been feeling must have been drawn from so deep within in her. That strength and determination was astonishing. Her swelling had almost doubled. While the cord was being scanned, we could see a new, more dangerous problem emerging. There had always been excellent blood flow through the cord to Marley, but suddenly it was failing, because her heart too was failing. She was only getting half the blood through the cord that she needed to survive, and her tiny heart could not keep up. We watched as her heart beat went from 155, to 60. We were sure we were about to see her die, but in true Marley style she kicked it back up again, and we breathed a sigh of relief.
As we finished the scan, I recognized the “bad news” look on the doctors faces. We hobbled into an office, and sat down. My blood pressure was taken, it was ridiculously high. I was handed some literature on Nephrotic Syndrome. I was now at risk for Dehydration, Blood Clots, Infection and complete kidney failure. We referred onto a different doctor at the same hospital, Dr Sandra Lowe. She reminded me of my aunt, in both dress and demeanour and this would become a comforting thought as the day wore on. She asked me questions about my general health, both before and during pregnancy. And then she said to me “You’ve been feeling awfully sick this entire pregnancy, haven’t you, Hope”. I burst into tears. She was right. I had been so, so sick. But the only thing I cared about was Marley, getting her to viability, helping her live, having my daughter. I had been ignoring what was going on in my own body, because I was more worried about what has happening in Marley’s. She showed sheer intuition while examining me, and came up with a plan that we were all happy with. She wanted to find the cause of the Nephrotic Syndrome, she expected it to be caused by pregnancy, but said it could have been something I already carried. How I clung to that statement. She did say, however, that when it became dangerous for me, she would advise delivery. We were admitted.
We were taken to an antenatal department, where mothers who needed close monitoring usually went. Most of the time, these women were 30 weeks at least, but because of Marley’s illness and my developing Mirror Syndrome, I was there at just 19 weeks. I had a cannula put in, and started receiving drugs for blood pressure, and also to reduce the fluid I was carrying. I had to go on medications to pull the fluids from my tissues, back into my blood stream. Then I required medications to get my kidneys to remove the excess fluid through urine. I had to have a catheter in, because my kidney’s weren’t working properly. One of the Maternal Fetal Medicine ladies came up to see me. Through the course of the conversation I asked her how long I would have to hold on, to give Marley a chance at life. She looked at me, with the saddest eyes and said “Honey, I don’t think there will ever be a time that she will have a chance”. It was hard to hear, but intuitively, I already knew it. I’d seen the scan, we were losing her. However, she did agree to have a paediatrician come see us on Monday – for us, there was still some hope.
I got rapidly sicker. My stomach swelled and I couldn’t breathe, the doctor was clearly worried. I was transferred out of antenatal, and into acute where I could be better monitored. Alarm bells should have been ringing, but I still had my blinkers on, I was imagining life in hospital for the next eight weeks, and even Marley’s inevitably long stay after she was born. I couldn’t sleep Friday night, I was being checked every hour. I also was struggling to breathe. I had fluid around my lungs, and laying down was impossible, even with the added assistance of the oxygen mask. Nath had gone home to the kids on Friday night, and was coming back Sunday. My blood pressure kept climbing, despite the drugs and I was on blood thinners to try and prevent blood clots. I was getting paler, and paler. But If I had to live like this for three months to give Marley a chance, dammit, I would.
Saturday 12th September, 2009
At 8am I was told that I was rapidly deteriorating. I had Nephrotic Syndrome, Pre-Eclampsia and Mirror Syndrome. All I could think of was Marley fighting the shit out of this thing, and so I would too. I was NOT going to let my body dictate the end of her fight. So, I sat nodding, but ignoring what was being said. I couldn’t eat, and was still vomiting. I was on medication for almost everything you can think of, and most of them had stopped working.
By 11am, I felt it. I was dying. The doctors knew it, and I knew it. Finally, I saw it. I started bleeding. I asked for a Doppler, so I could listen to Marley. I was told nurses aren’t allowed to do that, only doctors can. Truth be told, I had felt her less and less, and they had expected her to have drifted away. But, when the Doppler was finally put on, there was her heartbeat. I thought it had to be mine, it was so slow, but was told it was definitely hers. The doctor sat down next to me and said “Hope, You are really, really sick. If we don’t do something now, you might die.” She told me that even if I was pregnant with a totally healthy baby, at this point they would be recommending the same thing. I remember shaking my head, begging no, not now. Not yet. I begged her, I cried at her, “Is there anything else, anything, that we can do?”, and she just said no.
She asked me to consider an induction, that afternoon, as she didn’t know how much longer I could last. The next hour was a blur, but she told me that the sad thing was that even after all of this, being that I was only 19 weeks, and induction might not work. I could be in labour for days. To me there could be no greater hell.
My Mum and Dad bought my firstborn child, Paige, up to visit. I had not yet told them about the induction. Mum walked in and burst into tears. All she could say was “You look so sick, You look so sick”. Paige followed her in, and the look on her face broke my heart. She was terrified, her mum is laying in a hospital bed, swollen, sick and has tubes coming out from everywhere. That is what made me start to think about living, again. Up until then, it had all been about Marley, but I have so much more responsibility than that. I had the doctor call Nathan, and tell him what was happening. I could not get the words out. He jumped in the car to start the three hour drive. She agreed not to start the induction without him.
At 6pm she came in with one small, half white tablet to start softening my cervix. The doctor wanted to use only a half tablet, to see how my body reacted. She expected it to be a long labour, I knew better. I could already feel my body beginning to react, my baby was dying, and my body was letting her slip away. I said to Nathan, it will be quick. I enquired about a C-section under a general anaesthetic, but was told I was too sick, and might not recover from the surgery. Within a half hour, I was contracting. I started to panic, I didn’t want to go through this, I didn’t want to do this, not yet. It wasn’t fair, it had to stop. I begged the doctors to knock me out. It wasn’t the physical pain that crippled me, it was the emotional heartache I was feeling. They gave me some morphine to help calm me down, and then bought in the gas. They checked my progress, and were stunned to see I was 5cms already. I was taken to the delivery suite, it was beautiful. A large room, with mood lighting, A bed, and a mattress on the floor, with big bean bags. We opted for the floor. The radio was on. Nathan and I laid on the floor and he talked to me, soothing me with every loving thing he said.
It took a few hours of listening to my best friend talk to me, while I sucked on the gas to get through. It was the most peaceful I had felt in two months, while he kissed my forehead, talked to me, and held my hand. I knew it was because of this brilliant man I would make it through. I could feel Marley coming, and called for the midwife. I was right, and after a few pushes, she was out.
I asked the midwife if she was alive, and was told no, that she had already passed away. We believe it happened even before labour. We are grateful for it, as it means she passed over while still warm and protected inside the warm loving safety of her mummy. It was the only protection I could offer her.
The midwife told us how sick Marley looked. We didn’t want to remember her like that, so we chose not to see her. It was a very hard decision, but we had seen in our research babies who were not as sick as Marley, our princess would undoubtedly look worse. The midwife wrapped her in a beautiful blanket, and took her to do hand-prints, footprints, and a few special photos of her. We are happy to remember her as she would have been, our blue eyed, blonde curly haired princess. I still had to pass the placenta. It was in pieces, and I was haemorrhaging. I was rushed to theatre, there was no time for an epidural, I had to go under a GA. I had three blood transfusions that night, and got back to my room at 3am, but don’t remember any of it.
People talk about my strength, having gone through this. But Nathan IS my strength. To see your wife so sick, she is almost dying as she fights to hold onto the life of your unborn child is unfathomable. He was present in every second of Marley’s life and death. I could not have survived any of this without him.
Sunday 13th September, 2009
I woke up feeling awful. I started to improve, but by Sunday afternoon I was crashing again, and needed another two blood transfusions.
Monday 14th September, 2009
By Monday I had lost 7 litres of fluid from my system. It had been floating around in my heart, lungs and tissues. By Monday night I was feeling slightly better, the blood was filtering into my system, and the fluid was filtering out. The catheter was removed, and I was weeing out 400ml an hour.
Tuesday 15th September 2009
I woke up and felt as though I was in a different body. It was only then that I realized just how long I had been so sick for. I was weighed, and had lost ten kilos in two day – just in fluid loss. I was examined and my lungs were found to be fluid-free. I could breathe easily, again. My blood pressure was still up, but I was prescribed BP meds to go home with. The doctor was smart enough to realize I needed to be home with my loved ones. They had saved my life, and now it was up to me to heal it.
The genetics team came to see us, and told us they could not see any obvious reasons Marley was so sick. They did tell us by looking at her that they didn’t believe she ever would have survived the pregnancy, and that it was a miracle she had made it as far as she had. We requested an autopsy, but it never revealed what went so wrong in our precious daughter’s body. It was put down to a 1/5000 chance of bad luck, but to us, she is on in a million.
Marley’s sheer determination, and courage changed my life. No longer do the little things bother me, who cares if you get caught in traffic, or if the old lady takes a long time at the checkout. The point of life is that it’s a gift, and to make the most of it. Marley was cremated, and we bought her home with us. She has a special place in our home, and in our hearts. Marley Memphis Sutton became a big sister in August of 2010, her baby sister Scarlette Memphis Sutton was born healthy and apart from a premature labour scare, complication free.
We credit our family for getting us to where we are today. And we are eternally grateful for the miracle that is Marley.
You can view Marley’s Video here
This is the story of Marley, as recorded by her mother, Hope. It is part one, of a two part series. Please read the trigger warning, this is a heartbreaking sequence of events.
“They gave so much to stay little. But then, angels always do”.
We weren’t strangers to loss. Our hearts had been broken before, we had said goodbye to three tiny babies, each just a few weeks after we discovered them, but that didn’t minimize the impact they left on our hearts. Still, the Miracle of Marley was something we never in a million years could have imagined.
Tuesday 14th July, 2009
I stayed home from work, I had an awful case of the flu. I was 11 weeks 1 day pregnant, and my all day sickness and flu combination had me unable to move from my bed. I had booked in for my NT scan for the coming Friday, but something was wrong. I was bleeding, and it was heavier than the bleeding I had already been experiencing. I was getting worried, bleeding was normal for me, but not like this. This was different. I called the scan clinic, and they changed my scan to that afternoon. I was expecting the worst, I expected the baby to be gone. But to my surprise, a tiny heartbeat was flickering on the screen. I cried. We saw arms, legs, a little face. The sonographer said things looked fine. He took measurements of the Nuchal Fold, checked we had done the blood test they needed me to do and sent us on our way. We were ecstatic! Our baby looked wonderful!
Wednesday 15th July, 2009
At about 3pm, Harper (my son) and I were unloading the dishwasher when the phone rang. It was the GP’s receptionist with a message the the doctor wanted to talk to me. My obstetrician was overseas at the time, so my GP had referred me for the NT scan. My heart sank. He told me the news from the scan was not good. He told me there was a 1/42 chance that our baby had down syndrome. The number shocked me, for my age and health status the number should have been more like 1/900. I was crushed. He strongly recommended further testing, an amniocentesis. I felt as though I couldn’t breathe as I hung up the phone. I slid to the ground, and called my husband Nathan. He came home from work. The phone rang again, another call from my doctor. More bad news. I was only 11 weeks pregnant, the amnio could not be done until we reached the 16th week of the pregnancy. He recommended a CVS instead, a procedure that carries a 1/100 chance of causing miscarriage. After some research I believe the odds were actually better than that, so agreed to have the procedure done. I was told there was nobody in my area to perform the procedure, and that I would have to go to the big hospital, some hours away from home. I researched the doctor, and finally felt comfortable that she was one of the best, and that my baby and I would be in safe hands. The next few days are a blur of worry, and anxiety.
Monday 20th July, 2009
Nathan and I were driving up to the hospital, and staying overnight. We had to stop by the doctors office and pick up the report and referral details. Of course my mummy instinct kicked in and I read the report in the car. It said:
“Extremely large nuchal thickness of 5mm, indicative of a serious issue. No nasal bone was detected (85% of babies with downs to not have a visible nasal bone at this stage) and possible omphalocele. Genetic counselling and further testing is strongly recommended”.
What? What the hell was that? Out came Google, where I learned about an abdominal wall defect where the organs protrude from the stomach in a small sack. Again, I was crushed. I had written our baby off.
Tuesday 21st July, 2009
We went into the ultrasound room, and spoke with the sonographer. She looked grim. We immediately saw the massive nuchal fold. It was worse. However we did see a nasal bone, and confirm that the abdominal wall was fine, and her heart was beating. As far as we could see, our baby looked ok. The doctor came in, confirmed the findings and broke the news that the nuchal fold was now 6mm, as opposed to the 5mm it had been previously. Then she went ahead and did the CVS. She spoke at length with us about Turners Syndrome, a syndrome that only affects girls. Our baby was a girl! A daughter! I had read a lot about Turners syndrome, and knew enough to know that a lot of the symptoms of TS would be visible on ultrasound by now. My baby was displaying none of them, apart from the enlarged nuchal fold. The chance our baby had down syndrome had now changed from 1/42 to 1/2.
Wednesday 22nd July, 2009
We were supposed to get a call by lunchtime with the preliminary test results. I was clock watching. At 12.30, the phone still had not rung. 2.30pm came and went and I was starting to get more and more concerned. We caved, and called the doctor’s office. The doctor was busy and would call us back. And then finally at 4.30 we received news. The first words I heard were “Hope, It’s Doctor Ramsay. Good news, it’s clear!”
WHAT! And it’s confirmed! Our baby is a girl! The results we were receiving had ruled out Down Syndrome, Turners Syndrome, Trisomy 13 and Trisomy 18. The rest of the test results would take two more weeks, but wow! We were so excited! Two weeks later we would find out that the cells they had taken, on rare occasion do not grow in time to be read in the two week time frame. Three weeks would pass before we would get our results.
Wednesday – August 2009
I was grocery shopping with Harper when I realized a message had been left on my mobile. “Hope, it’s Dr Ramsay, we have the final results from the CVS and it’s good news”. When I had a minute to call back, the office was closed. But I knew this meant we were in the clear. Our daughter was going to be fine. We knew there were some things to look out for potentially, heart problems, spina bifida, but generally treatable concerns. Our fears were gone, our baby was ok.
Thursday, 13th August 2009
I woke up feeling amazing! My all day sickness had eased, Nath and I were heading to Sydney for another scan of our little girl and now we had almost nothing to worry about! I could hardly contain myself on the way up, we were so excited. We were taken into the ultrasound room where the sonographer had been briefed on our CVS results and was all smiles. Until the first image of our baby came up on the screen. There was our baby girls head with a MASSIVE fluid sack around the back of it. It was as large as her head, and I knew immediately it was not meant to be there. I also knew what it was. I had spent the last few weeks researching all the possible things my precious baby could be fighting against, and this was one of them. Nathan had no idea, but even he could recognize something didn’t look right. It was a cystic hygroma. The only images of them I had seen were on the internet, babies of about 18 weeks gestation who had passed away from the condition. I couldn’t breathe. The sonographer continued scanning, and found a small amount of fluid in her abdomen, and lungs. This was not good. On the up side, her spine was perfect, she was measuring right for dates, she had perfect fingers and toes, and her kidneys were functioning. Her heart also looked good. Her face was beautiful, but the sonographer could not find her bladder. She left the room, and came back with Doctor Ramsay.
Doctor Ramsay came back very sombre, and clearly upset. She told us this was not good news. When I asked where it had come from, she replied that she really didn’t know, but that most commonly it is caused by chromosomal abnormalities. This confused us, our baby had been cleared! I asked if she would make it, if our daughter could live. Doctor Ramsay looked towards the floor, and shook her head ever so slightly. Our daughter was going to die. That’s what she had just told us. Everyone left the room to let me get dressed. While it was just Nathan and I, all I could think of, and say was that there was no way I was killing my baby. We decided that no matter what, the life we had worked so hard to create would not end in our hands.
We met Doctor Ramsay in what we called “the bad news room”. A small room, with a lounge, table, chairs, and a box of tissues. Doctor Ramsay barely got through the door before I announced that we would not consider termination. She understood, but still looked worried. I asked “What do we do now?”. A barrage of blood tests were ordered, to check for maternal infections that could have been causing her illness. It could have been her kidneys, or spina bifida. Both were ruled out. The next step was a full heart scan during the 19th week of pregnancy, if she made it that far. It was made very clear to us that the chances of her heart stopping prior to the scan was high. After that, at 22 weeks we would see a paediatric cardiologist to have a heart echo done. At this stage we were told her chances of survival were next to none, but we still would not waiver. We then had to go back into ultrasound so they could try and find our baby girls bladder. It took time, but it was sighted.
The drive home was awful. I was on my iPhone, googling symptoms, looking for stories of babies who defied the odds. Unfortunately most everything I read agreed with the doctors. It was becoming clear that our baby had very little chance of rallying against whatever was attacking her. While I was googling, I remembered seeing the word “Hydrops”. I looked it up and learned it was the medical term for the fluid they had found in her belly, and lungs. It said that “Where Cystic Hygroma is presented with Hydrops Fetalis the mortality rate is 100%”. Yes, all babies who have this condition die. I felt sick. When we finally got home my obsession for research took over. I found a few websites with success stories. Babies with the exact same prognosis as us, who had fought and survived. So where on earth did the 100% mortality rate come from?
(The truth is, that the majority of parents who receive this diagnosis will go on to terminate the pregnancy. The thought of continuing a pregnancy where the baby will almost certainly die is unbearable for some, and not a person on this earth could condemn them for that. It’s such a personal and difficult choice. )
A few days later…..
My obstetrician wanted to see me yesterday. He had been faxed my scan results and as expected holds no hope that she will survive, or make it past 20 weeks gestation. If she does make it far enough, he has agreed that we should deliver in Sydney and determine what specialists we will need on hand. He is of the opinion that it is very unlikely she will survive beyond 24 weeks, but should she make it that far that we should deliver immediately. I THINK NOT! I have made it clear to him that we are aware of the statistics, but we are also aware that there is a chance for her, and we are holding onto that with all we have. His comment was that we are “letting nature take its course”. I disagree. We are letting nature take its course to give her a chance to live. He also said he was sorry it had turned out like this, after all we had been through with our previous miscarriages. This really upset me, I wasn’t ready to give up, and I didn’t want him to, either. I told him that it hadn’t turned out like anything, yet, she’s not gone yet, so don’t treat me like she has.
He is a good guy. But he’s never seen this before, but he has said he will support us, no matter what our decisions are. Our baby had a 0.025% chance of getting this, and up to a 5% chance of beating it. She was 200 times more likely to beat it, than to get it. With numbers like that, our girl will win. So, in this moment, we are waking up each morning and listening to the glorious thumping coming from our fetal doppler.
Just came from the GP to get my referral to the hospital. He was obviously very shocked at what is happening, but I told him not to worry, that Marley will be screaming the place down in a few short months. (We’ve named our girl Marley! It’s perfect for her!). I did read the last report, and it is even worse than we first thought. The cystic hygroma is measuring a full 2.1cm (bigger than her head!), and has what is called a “Midline Septum” in between and has large cystic spaces on either side. I looked it up, and it’s just more bad news. Stupid Medical journals! Bleh!
Monday 17th August, 2009
I got a hold of the Fetal Medicine department at Randwick hospital. I spoke with an amazing doctor and I explained our whole story, from beginning to end and she was shocked and appalled at the prognosis we had been given. She admitted that while there are no guarantees for Marley, that the only problems we’ve seen are the hydrops and hygroma, the 100% mortality rate was inaccurate. She also can’t believe we were given this awful news, and then given no follow up care or support. She immediately slotted me in for a scan on Thursday, with a professor. I need to organize for all my blood results and scans to be faxed up there to them, and she is also organizing us to see a genetic counsellor. She thinks Marley’s odds at survival might be higher, and is stunned we were offered termination at a stage where they hadn’t even found much wrong. She is taking over my care, and has offered us the option of weekly scans. She said waiting four weeks “to see if she was still alive” was unacceptable. I am so glad to have found her! Marley fights on!
Thursday 20th August, 2009
Today didn’t bring the news we had hoped for. I have to commend the staff at Randwick, they made all the difference for us today. The cystic hygroma is bigger, but that isn’t what is concerning us now. Marley has gone from having slight hydrops to having marked hydrops. The fluid is now running under her skin, her tiny body is swollen and this is very, very bad for her. Her beautiful face is what dreams are made from – Our girl is gorgeous! As I laid on the bed being scanned, Nath held my hand tight with his reassuring grip as we both silently prayed for good news. In a second that was torn away from us. After careful scanning by the professor and a doctor, with two medical students watching on the gel was removed from my belly, and the debrief began.
The professor apologized for what he was about to tell us. “What we have seen is not good, the chances are not good, the chances of you going on to deliver a healthy baby at this stage is next to none”. No matter how many times you are told that, you can never ever prepare to hear the words. They just rip your heart out. We still don’t know why she is so sick. It could be viral, but he doubts it. It could be a rare syndrome that the CVS can’t detect, or it could be genetic, something we, her parents, have passed on. It could be recessive, so maybe 1 out of 4 kids will get it. None of this can be diagnosed prenatally, only autopsy could tell. For the moment we will watch her. He will not say she will not live, he admits he has been wrong before. But she does not look good, not at all. Over the next few weeks it may get so bad her tiny heart will give up. Or her heart may keep going, but the swelling happening inside her body could become dangerous for me.
At that point all I’m hearing is “blah blah blah” because regardless of me, there is no way we are delivering this baby unless she has the best chance at survival when we do so. If we get to 24 weeks a neonatologist will come and assess her, to tell us if and when they think delivery would be optimum. But for now, we have to wait. We will have another scan in two weeks. I feel awful for it, but I am starting to believe this little lady is losing her fight. All I want is for her to know her Mummy and Daddy love and adore her, and admire the amazing strength she has to keep fighting.
Sunday 23rd August, 2009
Well, believe it or not but our ‘lil lady is still kicking! It has now been nearly two weeks since she was dealt the “not going to make it” card, and to that she says PPPPPFFFFFTTTTTTTTTTTT!
I will have a scan at the end of this week, just to check on things. In all honesty we are no expecting any improvement yet, but hey, with Marley, who knows! My belly is growing rapidly, we’ve been told it’s because the placenta is massively swollen now too, and I’m carrying extra fluid. I like to think it’s from Marley’s enormous heart busting out to show the world what it’s all about. x
Monday 24th August, 2009
Wow, I just received an email from a complete stranger offering her services free of charge as a maternity photographer, and can you believe she only lives 20 minutes away? I am astounded at this incredible show of support and well wishes at this time. I will take her up on her offer, I would love to have some photos of our angel just in case. Not much else to report, we have another scan this Thursday so fingers crossed Marley puts on a good show. For everyone following our story, you are what makes the human race special. It feels as though we are riding on the wings of a thousand butterflies to carry us over these hard times. Again, thank you. x
Thursday 27th August 2009
It has been two weeks since the fatal diagnosis. We are having another scan, but logically just to see what the ‘lil lady is up to. We were taken into the ultrasound room by a pretty young girl, (I thought, we got a fresh one!). When we walked in she asked how we were, introduced herself and then asked (you’ll love this!), “So has everything been going fine so far?” I was quite bewildered, and answered “Um, no. You have our reports, (I had made copies and hand delivered them so everyone was up to speed) our baby has been diagnosed with a Cystic Hygroma, and Hydrops”….. The colour drained from her face. She commented “I’m just learning, but I’ll do what I can and then get my supervisor”. She was so nice.
Nathan and I said no problems, and I climbed onto the table. The screen came up and there was Marley’s heart, fluttering away. There was an almost audible sigh of relief from the sonographer, and she then continued on taking measurements and checking things. I asked a couple of questions, but she had no answers so I just left it after that. The supervisor came in, checked over the report and announced that he had never seen a case like Marley’s before. This didn’t instil a great deal of confidence. But by now Nath and I had seen what we needed to, the Hygroma was still very big, but not worse, more fluid around her lungs, less in her tummy. Her forearm and hand are now quite swollen, but she is wriggling around like nobody’s business, very healthy and not acting the least bit sick!
The sonographer-in-training took measurements and messed them up. She had her belly measuring at 23 weeks – What?! My heart almost stopped, things had obviously gotten much worse! But then they looked again, and got it right. What a huge scare! Afterwards, a more senior sonographer came in to take a look. She said she had heard of hydrops, but again had never seen it firsthand! All these unknowing technicians! She said she’d like to take another look at the heart, which was fine. By now there were three sonographer s in the room, and if anything good was happening it was that they were learning, and maybe would be able to be more positive with other families in the future regarding prognosis. She grabbed the wand and Bam! The power went out.
Nathan told her not to worry, we are clearly bad luck. It came back on, the computer started to boot up and then it went again. Marley, you little show off! She finally got to look at the heart, it seemed fine. When we got home, I compared last week’s measurements to this weeks. This week’s measurement is about 1cm smaller, which if that is correct is a great thing! We go back next Thursday. The news still isn’t wonderful, but our little trooper is still beating the odds.
Meet Chantel, Kai’s mum. Kai was battling hydrops from the early gestational age of 18 weeks but Chantel’s faith in her little guy never wavered. She was the first person I ever spoke to about Ariana’s hydrops, and she has dragged me through some truly dark, and terrifying times. Be prepared to be amazed.
I can remember the rush of gratitude and joy that I felt the moment the sonographer confirmed that our Leilani was going to have a brother. I couldn’t think of another time that I felt so incredibly lucky – I was going to have the perfect, complete family that I had spent my entire life wanting. The last boy to be born in our family had been over 30 years before, and secretly we had all been praying for a little boy. I couldn’t believe my luck, and my husband and I shed a tear before immediately starting to talk about how we could surprise our families with the news that all of our prayers had been answered.
The 18 week scan was finished only a few minutes later. The sonographer allowed us to excitedly chat together before quietly letting us know that although there was no need for panic, she had seen something abnormal on the scan. Within 48 hours, we were sitting and waiting to meet the head of the Maternal Fetal Medicine department in our city.
It was discovered that our little boy had bilateral pleural effusions, fluid surrounding his heart and lungs. We had a detailed ultrasound, amniocentesis and various other tests. We had to wait for 2 weeks to see if the cause was an infection, to see if it would be recommended that we terminate the pregnancy. My husband’s 30th birthday was during these 2 weeks, and we had a huge party, but never told anyone what we were going through. Eat your heart out Brad and Angelina – we both earned Oscars that night.
We already had a name picked out for a boy, but should we use it? It was the only name we could agree on. Should we prepare the nursery? Buy blue blankets? Share pregnancy stories with all of the “normal” mums? How do you prepare for a baby that may not be? I spent a lot of time thinking about that question. Finally, I realized that he already “was”. He was my son, and he was beautiful, and precious, and here, and he deserved our favourite name and he deserved a nursery that his parents were excited about and he deserved blue blankets, just the same as our daughter deserved all of the little things we had done for her.
A very long two weeks later, we were back. Walking past the hospital café, I saw a beautiful big lion toy in the window. I told my husband that our little boy was as brave as a lion, and that to prove it, when he was born happy and healthy, I would buy that lion for him. We walked in to find out that there was no infection, but the fluid was getting worse, much worse. It was now in our little man’s stomach, meaning he had developed Hydrops Fetalis. This reduced his survival rate considerably. In our opinion, given his circumstances, his best chance was for us to physically try to help him. It broke my heart that my baby was only half way through his gestation, and already he had to be braver than many people ever have to. It just wasn’t fair.
We booked in to have a thoracentesis performed, a drain of the fluid from one side of his chest, to see if removing it would fix the problem. Within 48 hours though, all of the fluid was back, and even worse than before. We had to move forward with another option – shunt surgery. This was when I started to realize that I would have to get used to sitting in the hospital ultrasound department waiting room, praying desperately for my baby to still be alive when they placed the scanner on my stomach. I still watched that toy lion in the window every single week.
The shunt surgery was performed and placed correctly in his little chest, allowing the fluid to drain from his chest out into me. Within 24 hours though, it had dislodged. Stubbornly, I refused to spend more than a few moments being upset about it. My son needed me to be strong for him and to give him the voice that he didn’t yet have, and I wouldn’t let him down. We booked in for another surgery. On the day of the surgery, the fluid looked to have stabilized a little, so the medical team performed another thoracentesis instead. Just 2 days later, it was confirmed that the fluid was back again. A further shunt surgery was performed, but the shunt was placed too far in to be effective, so another had to be placed. This one was placed perfectly and looked to be working well – for a few days. Eventually, it too dislodged.
I spent a lot of time talking and singing to my little guy, willing him to get better, letting him know that we loved him and that I wouldn’t have traded him for anything in the universe. He was perfect in my eyes, just as he was. I refused to believe that he wouldn’t survive, and spent very little time entertaining that thought. I kept watching the lion.
I was given steroid injections and told that all we could do was wait and watch to see how he went. There was just no more that anyone could do, and we had already pushed our luck to its limit, having pierced his little home so many times for the amniocentesis and each of the 5 procedures. After all of this, he was still only 26 weeks gestation. We had weekly ultrasounds, at first seeing a little more fluid every week, before watching the fluid begin to stabilize.
At just over 33 weeks gestation, we had come in for our normal ultrasound, nervously joked with our beautiful midwives like we normally did, then waited to see what was happening. The scanner was placed on my stomach, and everyone in the room froze. My husband and I had seen enough ultrasounds to realize that something was very different. ALL of the fluid was GONE! The condition that my son had, Congenital Chylothorax, had corrected itself, and our Kai was given a further 4 weeks of lung development before deciding to make an unexpected appearance on the day of our final ultrasound.
He was born healthy, happy and LOUD!! He didn’t spend so much as a night in the NICU. The day after he was born, the first moment I was allowed out of my room after surgery, I stood up, got changed, and hobbled all the way down to the ground floor of that hospital on my own, all the way down the hall to the café and gift shop. Finally allowing myself to feel some of the emotion that I had tightly held in for the last few months, without any embarrassment, between huge heaving sobs, I bought that big lion for my brave little boy.
Kai has some little battle scars from his procedures in utero, and from his surgery a few months after birth to remove the wayward shunt, but that’s what they are…. battle scars. A reminder to us, and eventually a reminder to our Kai, to never forget where he came from, what he has overcome, and how incredibly extraordinary he is.
Thanks to my boy’s strength, and bravery, my life has completely changed. I have made so many beautiful friends who share a similar story, assisted others through this journey, started to volunteer for various foundations to try to make a difference, learnt that the small stuff IS actually small stuff, and been shown what is truly important in life. I couldn’t have dreamed of a more blessed existence.
In 2009, Shawna’s life was turned upside down. She had gone from being excitedly pregnant, to being told her baby was sick, and would most likely die. The following account is her diary, published as I received it. I have not edited her words, they are perfect and heart wrenching as is.
June 27, 2009 a baby # 2 was conceived in love.
August 05, 2009 heard our baby’s heartbeat for the first time at 7 weeks gestation. After going through our first loss together 5/12/09 at 8 weeks gestation, this day and the sound of that beating heart was priceless and brought us to tears. Though we will be scared of another loss, we have to hope for the best. Seth was with us, along with our lovely bereavement nurse Darlene Fisher of the Women’s Hospital.
September 16, 2009 had blood work and ultrasound today. While trying to get this baby in a good position for a good ultra sound pic, we got a good laugh. Baby waved, did a little dance, flipped over and went to sleep instead.
October 19, 2009 Doctor Walker’s office called to state blood work testing was high and that we needed to be scheduled to see the specialist. Not the news we wanted to hear on dad’s birthday, the rollercoaster of worries just got worse.
October 29, 2009 Ultra Sound today’s date shows fluid on the back of baby’s neck, not a good sign. However we were told It’s a Girl! We had a hard time making anything out on the ultra sound for the way she was curled up in a ball; however dad caught her stick a finger up.
October 31, 2009 Mom and dad each wrote names down without discussing them to attempt to name this baby girl. When done it was obvious what her name had to be……”Marlee” was the only name on both lists, even spelled the same (what are the odds of that).
November 05, 2009 Spent five hours at Dr. Fitzpatrick’s office today. We were told Marlee had what was called Fetal Hydrops (fluid built up on the back of her neck and abdomen, which has a high mortality rate). We were told outlook was very grim and he didn’t see her making it. We were then scheduled weekly and went through an amniocentesis and blood work for chromosome and infectious testing.
November 09, 2009 Was called to say our initial testing came back negative, awaiting the full test results. We will take this and let it give us hope that Marlee is strong and will make it into this world.
November 11, 2009 Dr. Fitzpatrick advised although testing came back normal, the Fetal Hydrops remains. Fetal Cardiologist was called to his office to see us that night to check on Marlee’s heart. After spending 3 hours at the office we were told her heart looked good, just have to get a game plan on removing the Fetal Hydrops fluid from her body to give her any chance possible of living. Told that the surgery Marlee would need had not been done in the area before. Dr. Fitzpatrick stated he has performed such surgery once and that was a year ago at Duke University. He was going to call his colleagues at Duke and University of Cincinnati to discuss Marlee’s condition.
November 18, 2009 Dad underwent blood tests also today, checking all we could to make sure we knew all we could for Miss Marlee. Dr. Fitzpatrick noticed that amniotic fluid was low today’s visit (sign baby is in distress) and that Marlee was showing signs of anemia. Told mom and Marlee must go to surgery at 3pm this Friday to attempt to remove the fluid from Marlee through mom’s belly.
November 19, 2009 Up until this date, mom had only felt occasional flutters from Marlee in her belly. But Daisy the beagle and mom fell asleep in the recliner tonight together and Marlee moved or kicked strong enough to feel her for the first time with her hand on her belly. This would end up being the only strong movement ever felt.
November 20, 2009 Mom and dad went to Deaconess Women’s Hospital for Marlee’s surgery at 22 weeks gestation. Had an ultra sound before surgery. Miss Marlee showed her face for the first time, sticking her tongue out at us (what a little stinker). Wow this surgery took an awful toll on emotions. Dad was left in the room for to await our return from surgery. Mom was given only a spinal block and was fully awake with the blue drape across her face to not be able to see what Dr. Fitzpatrick was doing. The surgery room was full of staff to assist the doctor in these surgeries that they had never witnessed before. Mom laid there the 3 hours praying continually that Marlee had the strength to make it through this day. Marlee had 3 surgeries (each of the 3 all high risk of loss) and was told it appears she is pulling through with a strong heartbeat. She underwent Fetal Blood sampling testing from her umbilical cord, she had the fluid removed from both sides of her abdomen from the Fetal Hydrops, and had a full blood transfusion through her liver since doc was unable to get a good clear view of the vessel needed in her umbilical cord. Mom was left with 20+ visible needle holes in her belly, but with much relief that Marlee was such a fighter and pulled through to return to dad who was anxiously awaiting our return to the room. What a tough cookie little Miss Marlee was.
November 23, 2009 Went in for our re-check from surgery to check on Marlee. Was told her heart and Doppler readings looked good, however the fluid that was just removed on Friday had already returned. Mom now has too much amniotic fluid. The Fetal Hydrops appears to be back in her abdomen and in the placenta. Was told once again outlook is grim. We will be re-checked again next week. If her heart and doppler’s still look good we may need to repeat her surgeries. If the fluid is not removed her lungs will not be able to finish developing and she will never breathe even at birth.
December 01, 2009 Went back to see Dr. Fitzpatrick, 24 weeks gestation. Mom had a battle with emotions over Thanksgiving holiday weekend. Seemed to be the longest week before this re-check. Mom has a sense that something was not right, however no know complications or warning signs so tried staying positive. Only to be told Miss Marlee had no heartbeat with her ultra sound today. Mom and dad were taken down at 5pm to labor and delivery to be admitted in order to be induced to say Hello and Goodbye to Miss Marlee. At 6pm meds were given to begin the process, doubling each dose every 4-6 hours.
December 02, 2009 Still waiting to say hello to Marlee. What a stressful time, watching the clock minute by minute awaiting this nightmare to be over. Dad keeping such a watchful eye on mom, at her side every moment. Neither slept well, only drifting off for moments at a time, but quickly waking up to check on each other. We had nothing with us at the hospital being we left the house for what we thought would be just a doctor’s visit only. Dad was sent to purchase some pajamas and such for himself in order to be able to shower. Mom hadn’t been allowed to eat since yesterday and was finally given a break in meds to have dinner with dad and then start the process again. Having to have meds put directly on moms cervix was the most painful thing the past several hours. Dad held moms hand as she clenched in severe pain each time they had to place more meds trying to speed up the process of delivery.
December 03, 2009 What a long morning. Mom had been up since 4am with the meds not making her feel well. The cramping finally began. Pain meds did not work, so finally decided to go with the epidural. Dad held moms hand all morning, wishing he could take the pain away. Finally at 1:58pm moms water broke. At 2:11pm Marlee JoAnne was born 2 lbs 7 oz and 13 inches long at 24 weeks gestation. She was cleaned up the best they could and brought back to mom and dad to say hello. Her poor little skin was affected so badly from being in the womb so long after her little heart had stopped along with all the Fetal Hydrops fluid trying to make its way out. We were scared we were going to hurt her being just a touch was wiping her little skin away. What a long few days of waiting for her. Mom and dad were able to clearly see through the swelling and fluid that Marlee had moms nose and dads upside down frown marking on her chin. Marlee was taken to the angel room after a bit so that she could remain cool to help preserve her precious body as much as possible.
December 04, 2009 Mom was released this afternoon for dad to take her home. Mom and dad visited with Marlee a little while before leaving. She had changed so dramatically since being born. Most of the fluid had seeped out of her little body and she was so much smaller in size. We had to leave her behind to wait to be transferred for her autopsy, hoping that something could be learned from her condition that would assist us in the future, help the docs, or someone else. We stopped in Ft. Branch at Grace’s to buy her a stylish little dress, of course we had to get a dress made for a baby doll. Dad found some princess booties and some really small stuffed animals that are just fit for her size to go with her. We will now await her funeral visitation and then to lay her little body to rest with her grandma Joan “JoAnne” so she is not alone. This has been such a hard thing for both mom and dad, however we would rather she go with God sooner than later if that is how it needed to be. We did not want her to suffer in pain. Just wish she didn’t have to have the rare Fetal Hydrops condition and she could have joined us in life. We will miss her so! No parent should have to go through this that is for sure. So glad that we have each other and so much love between the three of us (Dad, mom, and Seth) to get us through. Wishing she could have joined us as planned around March 22, 2010, instead she had to go on to heaven to watch over us with our other little angel, only known as Baby Ault.
December 10, 2009 Mom, Dad, and Seth stood by Marlee JoAnne’s little bitty white casket greeting family and friends that came to pay their respects. This was a very hard night for all of us.
December 11, 2009 Mom, Dad, Seth, Grandma & Grandpa Ault and Grandma & Grandpa Young met at Grandma Joan’s burial site for Marlee’s private service. She was laid to rest with Grandma Joan “JoAnne” today in
December 28, 2009 Went back to the specialist today to go over autopsy report. Nothing standing out for the reason’s behind the fetal Hydrops. They did notice that there was blood clotting in the placenta (which was 3 times the size it should have been due to the Hydrops). This clotting could have appeared after Marlee passed, however just to make sure mom does not have a clotting disorder, she will under go special blood work testing in approx. 2 weeks. Unsure what our chances of the Hydrops happening again, but feel we can’t give up! Found out level were a little high in the blood clotting disorder for mom. However they know this had nothing to do with Miss Marlee’s death. Mom will have these blood levels re-checked if and when pregnant again. If it remains high, then daily shots will be given. (Later in Oct. 2010 found out that I do NOT have any blood clotting disorder….so must have been after death that the clots formed).
Marlee’s Video Tribute was placed on the funeral homes website. What a wonderful memory we have, such beautiful pictures we have of our moment with Miss Marlee JoAnne!
Our thanks to the Now I Lay Me Down To Sleep Organization.
We do this in Memory of our Angel Babies, because of them, we are forever changed!
This story is particularly important to me. Heidi, Ellery’s mum was one of a few very special ladies to reach out to me shortly after Ariana was diagnosed with Hydrops. Hearing Ellery’s story gave me hope, and the strength to go on. Without Heidi, I don’t know how I would have coped. I can’t give an eloquent introduction to this story. Nothing compares to the beauty within it, as Heidi tells it.
Life was perfect! My husband, Greg had a wonderful job he loved, our year and half year old son Wyatt was a dream and we were expecting another baby; a girl we named Ellery! We had it all, and life was wonderful! But our world forever changed September 9th, 2008; the day we learned our unborn daughter may not survive.
I was 30 weeks pregnant and full of excitement the day I went in for an ultrasound. But, my excitement was taken away in an instant as I heard the ultrasound technician tell me fluid surrounded my baby’s heart and lungs. My husband I were sent rushing to United Hospital to get an in-depth ultrasound, fetal echo-cardiogram, amniocentesis, genetic counselling and countless more tests. We were told our daughters condition was life threatening as she had bilateral pleural effusions, fluid surrounding her heart and lungs. We were told her chances would plummet if the fluid spread around her body.
A week later we were back at the hospital for more tests and ultrasound. The grim news came when the doctor entered and told us fluid had seeped into Ellery’s scalp, officially diagnosing her with Fetal Hydrops, and sucking away her chances at life. She was given just a 5% chance to survive, as Hydrops carries a mortality rate of up to 98%. The exact words are forever engraved in my head. “Her lungs may not be compatible with life”. It was beyond devastating to hear, as I started to weep into my husbands shoulder.
A few days later, I was admitted to the hospital in the ante-partum unit. The nursing staff took excellent, and understanding care of me for eight days before Ellery would enter the world. The knew who hard this was going to be for my family, and I, yet somehow I stayed optimistic. Even the day before my daughter’s birth my father said to me, “God needs angels, too”. How do you respond to something like that?
My planned c-section was on Tuesday, September 30th. Around 9.45am, the call came, they were ready for us. “Us” – the were ready for “US” – me, Greg, and Ellery. They were ready for us. And I was ready for them. As ready for them as I could ever make myself. I remember being offered a wheelchair, but declined. I could be strong and walk myself into my own operating room. The walk, oh I remember the walk. From the ante-partum unit to the birthing suite. It must have been such a sober thing to watch. My nurse, Maureen, Greg and I led the way, with my parents, grandparents, Greg’s mom and brother all walking behind us – it honestly felt like funeral procession. I don’t think any words were spoken, just the shuffle of our feet walking to my baby’s birth….
When we arrived at the doors, Maureen escorted me in, where I had to kiss and hug my family and husband good bye. This was hell. I had to face this on my own now – just me and my Ellery. Thank God for Maureen, she was there every step of the way. I know I would have lost it without her. We took a couple steps and stopped just before the operating doors. I had to drink some antacid stuff to neutralize my stomach, in hopes I wouldn’t throw up. I remember the taste – something I still can’t explain to this day. - just awful. They told me to do it like a shot – I think I joked about being from Wisconsin, and that I could do that! Ha ha. And that, was the end of my jokes and wise cracks, as the operating doors opened, and I was shown the operating room that awaited my baby. This is when I completely lost it.
There were four or five nurses setting up all the instruments and medical devices. I was sobbing and grabbed one of the nurses by the shoulders, and said “Please, save my baby!”. She replied back, with tears in her eyes “We’ll do everything we can”. I will NEVER forget that moment.
The shuffle then continued to my operating room, just across the hall from Ellery’s. It was big, and bright, and cold. It not only felt cold, but I felt cold. I remember the time being called when I walked in “10.01″. No one, and I mean no one would look at me. I sat up on the bed where I was prepped for my spinal. The spinal went in and started working immediately! I was shocked how quickly it worked, because in a matter of seconds I could not feel my legs and was being laid down by the nurses. The anesthesiologist was the next person I saw, but it felt like he didn’t see me. No on did – they just saw my belly, and the helpless baby inside. I think they were trying to focus on what they were about to do – Save my baby’s life! I think the anesthesiologist’s assistant was someone I felt safe with. She was there to care for my needs, and she did an excellent job. SHE looked at me – which made me feel safe, and human again. Someone looked in my eyes, and saw my pain and fear. I needed that. She took my blood pressure a couple of times, and all was fine – maybe a little high, but considering the circumstances, It was good.
I saw the surgeon, the doctor who was part of the decision to bring Ellery into the world enter the room. Dr David was about to open me up and deliver my baby. I was asked if I could feel anything, and I could – which caused me to panic. Then they asked “no, do you feel pain?” “…No”, I said, hesitating. “Ok, we can start – get dad”. Greg entered the room, fully dressed in a gown, mask and head cover. Then I heard “Scalpel”, I felt the cut across my lower belly, but I didn’t feel pain.
I felt the doctors working to get to my uterus, where my Ellery was all snug inside of me. I prayed and just looked into Greg’s eyes for any reassurance and hope he had. After only minutes I was told “You’re going to feel some pressure and tugging”. I felt the doctors push down on my belly, and a TON of fluid came pouring out of my body. This was the weirdest sensation, there was so much fluid in me, it felt like my body was being lifted off the table. And then, the tugging started. The tugging to peel me open, and to see my darling baby.
At exactly 10.34 am, Ellery Cherie’ Case was born! Pale blue in colour, not moving and not crying as her little lungs had no room to inflate. She was whisked away in an instant, and I only got a glimpse of her, before I urged my husband to go with her – give her strength and let her know you are here… because I could not be there. I wanted nothing more than to be by my new daughter, cheering her on in her biggest battle, but I was laying on an operating table, shaking uncontrollably from the shock the surgery and shock to my body, and trying to control the ever-mounting amount of stress.
The dedicated neonatal team was waiting for Ellery in the next operating room, waiting to try and save her life. It was twenty-five of the longest minutes of my life, as I waited, sobbed and prayed to God to give my baby life. The neonatal team took about 14 ounces (414ml!) out of Ellery’s chest, all while chest compressions were keeping her heart going. After three attempts she was finally intubated and on the oscillating ventilator, for the most critical patients. She was then stable enough to be moved to her new private room in the NICU – the first “home” she would ever know.
During her first day, she received two chest tubes to help drain the fluid from her tiny, innocent, swollen body. It was always touch a go – like all days in the NICU, but Ellery’s first night was a nightmare lived out loud as her oxygen and heart rate took a nose dive. The respiratory team rushed to her room, her blood gasses were checked and it was discovered that Ellery was suffering from pulmonary hypertension (high blood pressure in the lungs, which is fatal if left untreated), as well as pneumothorax (air pockets outside her lungs from her lungs not being developed enough). Within minutes a Nitric Oxide tank was wheeled into her room; when all the tubes were connected Ellery’s stats perked up – she was back, but nowhere near out of the woods. Morning came and we found ourselves rushing to the NICU to be by Ellery’s side as she once again had no reserves left. It was then my husband and I took somber photos of our baby together, as we were not sure how much longer she would remain with us.
Days came and went and she was slowly healing and fighting off the fluid that was trying to overtake her. We had her room filled with get well signs, pictures and a calendar that one of the nurses had made for Ellery. I tried to make it feel like home for her, and to encourage her, and let her know that so many friends and family and even strangers were praying for her.
When my baby was eight days old, I was FINALLY able to hold her. Tears streamed down the nurses’ faces as they helped re-run the tubes and wires and placed my fragile baby in my arms. My mother and sister were there to tape the beautiful moment – video I just watched for the first time two days ago. I whispered to Ellery, told her how proud I was of her, and that I would always be there – in the hard times and good. As she laid in my arms with so many tubes I couldnt’ count, I watched her heart rate come down and her breathing regulate. She knew I was her mama, and she was in the safest place, my arms. I finally got my golden moment, to hold my little girl, eight days after her birth.
It was Ellery’s 10th day of life when a nurse practitioner explained Ellery had Congenital Chylothorax – a leak in her lymphatic system, which most likely caused her hydrops. To reduce the fat and fluid in her system she was started on a low fat formula which seemed to do the trick, as it slowed the fluid accumulation on her chest. I was so grateful that the staff found this and were able to reduce the fluid – I actually hugged the nurse!
The next few days brought about good news as Ellery had her left chest tube removed and was extubated. We cried tears of joy as we watched our little girl take her very own first breath and cry, when she was twelve days old! To hear your baby cry for the first time, most parents hear that beautiful sound right away; we waited twelve days! A few days later her right chest tube was removed and Ellery was on the fast track to recovery. She came off oxygen and had almost absorbed all the fluid, showing us what a little peanut she really was. During rounds the staff would often step into Ellery’s room and marvel at her; they even called her “the incredible shrinking baby”!
Ellery became an official NICU graduate on October 27th, 2008 but that wasn’t the end of her hospital stay. I raced Ellery to the hospital the very next night as her oxygen saturation dropped into the mid 80s. We were admitted overnight to the pediatric floor, as Ellery needed a little whiff of Oxygen. I begged for the NICU to take her back, but they would not. I wish she would have been allowed back in, as she was only gone for 24 hours; and I longed for the people we knew, the people who knew us, and our baby. We were homeward bound the next morning, with oxygen tanks in tow. Twice over the next week we battled the waiting room of the ER as Ellery suffered from respiratory distress – fighting to keep her lungs open against the powerful fluid. She was finally admitted to the pediatric intensive care until on November 6th and it was found the fluid had re-accumulated. The haziness in the x ray was all too familiar of her NICU days, and watching her struggle to breathe was heart-breaking. After a week we brought our baby back home! However Ellery’s homecoming was short lived again as she was re-admitted a week later. Once again, fluid had seeped into her chest leaving her in discomfort and respiratory distress. The x-ray showed it again, but we didn’t need to see it know Ellery was in distress, we could see it, watching her retractions with every breath.
Our second pediatric ICU stay was familiar to our first; we were put in the same bed with only the privacy of a curtain. I worried about everyone who walked by, and prayed my baby would not get a cold, the flu, or RSV. I constantly asked the nurses to search the database if anyone was admitted for RSV knowing that infection could kill my baby if she contracted it in her critical state.
Another week went by in the PICU before Ellery was discharged. But this time was different, Ellery came home on the high flow, with a tiny whiff of oxygen. We found she needed the flow to help her keep her lungs inflated against the fluid, more than she needed the actual oxygen. This regimen seemed to work well for Ellery, and she liked it as I’m sure it made her feel better and breathe easier.
Ellery came home for good the day before Thanksgiving in 2008 – and she was home to stay! I will always say that was the best Thanksgiving ever, as we had so much to be thankful for! We were finally complete in the comfort of our home, the four of us. And while it was the most stressful of times to watch her so carefully it was soothing to have her in the comforts of home to heal.
While the next few months bought about weekly doctor appointments with the pediatrician, pulmonologist, geneticist, neurologist, and endocrinologist, we survived, as well as our daughter. We nursed her back to health at home with all of our medical equipment and she was given a clean bill of health from the Chylothorax on Feb 12 of 2009.
Since that time, Ellery has shot up the growth chart! And today, you would never know that she was a critically ill, premature baby. She has a few “battle wounds” to show for her rough start, and has a gross motor delay and speech delay but she is a beautiful, happy two and a half year old little girl who loves clothes, bracelets, barbies and her big brother. And we adore watching her grow, explore and learn every day. I thank God, our hospital and the March Of Dimes for giving us our miracle!
Thank you, Tam for allowing me to share Ellery’s story, and I thank your followers for reading and for all their support. God bless you all!
If you’d like to read more of Ellery’s story, please visit Ellery’s Caring Bridge Page. My family and I raise money for the March Of Dimes, a non-profit with the mission to improve the health of babies by preventing birth defects, premature birth, and infant mortality. If you would like to support our cause, please visit here.
Being told “Terminate” or “Wait for a miscarriage” is a pregnant mother’s worst fear. No person should ever have to make that choice. But Laura did, she chose to wait. And following that decision was the biggest series of miracles, and unexpected outcomes that any doctor has ever seen. This is her story, of hope, faith, and love for a baby so sick, that doctors gave her a less than five percent chance of survival.
At 12 weeks pregnant, in November 2009, I went to my local hospital for a scan. I went on my own as my husband, Alan and I didn’t think there was much need for him to take the day off work as the 12 weeks scan just confirms the date. Usually. With two healthy children, Joshua aged 5 and Matthew aged 4 we were not expecting any problems with this pregnancy.
During the scan, the sonographer was silent. As the minutes ticked by, I knew something was wrong. Various problems ran through my mind, but nothing prepared me for the moment when the sonographer turned to me and said that the fetus had a large cyst on the back of the head and neck, which meant it isn’t likely to survive much longer. I was devastated. I couldn’t believe that something like this was happening to me. I asked if there was any chance for the baby, but was told that I would probably miscarry within a few days as most pregnancies like this end before 13 weeks, but certainly within a few weeks. My options were to terminate the pregnancy, or wait for a miscarriage.
As soon as I left the hospital I broke down, I couldn’t stop crying. I couldn’t believe my baby was going to die. It just didn’t seem real. once I was home I told my husband, and started searching online for information about the cyst. I discovered it was likely called something called a “Cystic Hygroma“, On it’s own it seemed like the baby might have a small chance of surviving. According to what I read though, a baby with cystic hygroma often develops fetal hydrops, A condition described as 99 – 100% fatal. My husband and I started praying that the baby didn’t develop hydrops, and so would have a chance of surviving. I began to feel hopeful, that maybe things weren’t as desperate as they first appeared.
A couple of days later, we stopped by the local hospital to pick up my notes for a trip to a bigger hospital where a CVS test would be carried out. On those notes was the diagnosis -” Cystic Hygroma measuring 17.5mm observed on scan, fetal hydrops also present”. I broke down again. I just couldn’t believe it. We had spent all weekend praying that the baby didn’t develop hydrops, but it was too late. The baby was already hydropic, we just hadn’t been told. To make matters worse, the CVS could not be carried out because the baby was in front of the placenta. The consultant at the hospital said it was not likely that the baby would survive much longer, and told us that there was less than a 5% chance of survival. At this point I felt there was no hope for the baby, and I was sure I wouldn’t be pregnant for much longer.
Despite expectations, two weeks later the baby was still alive, so we returned to the hospital for an amniocentesis. By now I had found the story of Rosie Foster, who has Turner Syndrome and had survived a cystic hygroma, and hydrops. Her website also told of a lot of other babies who had survived similar problems. It gave me hope that my baby could survive too. Although when I said this to the consultant she told us we should not get our hopes up as the cystic hygroma had now grown to over 22mm, and she was severely hydropic with fluid built up in her chest, abdomen, limbs and under the skin, all over the body.
The day before Christmas Eve, the consultant rang me with the results of the amnio. She said the baby had Turner Syndrome, and asked what I intended to do. I was happy with the news, we were having a little girl (Only girls have TS) and she might survive, like Rosie Foster. So I told her I would be continuing with the pregnancy and hoping for a miracle. Her response was upsetting: she told me to ask my local hospital for fortnightly scans until the baby’s heart stopped beating, that there was no point in her seeing me again as the pregnancy would not continue much longer.
Christmas was a very difficult time, trying to be cheerful for my sons, but at the same time wondering if my baby was still alive. A scan a few days later, at 17 weeks, showed that the baby was still fighting but her condition had not improved. Every day I woke up wondering if she was still with us, and every night I went to sleep wondering the same. Life continued as normal as it has to, but it was very difficult. There wasn’t a moment that went by that I didn’t wonder if my little girl had died. Online support groups kept me going, because it was too hard to say how I was feeling to my friends and family. I was scared I would fall apart, and not be able to cope anymore.
At 20 weeks a scan showed her heart still beating away. A joyful moment! Reaching that half-way mark felt like a great achievement. New problems presented themselves, including an echogenic bowel which later resolved, a mass of tissue in the hygroma (which had now grown to 65mm) thought to be fluid leaking from the spine or brain but which also resolved, and a low level of amniotic fluid, which persisted, but she was still fighting!
At 22 and 28 weeks, we returned to the consultant who diagnosed the baby with a heart problem, co-arctation of the aorta. We were told she would need a heart operation when she was a few days old, to correct it. After that, our consultant appointments were transferred to a larger hospital which had the facilities to deal with heart problems. At the same time we received the good news that our baby no longer had Fetal Hydrops! The fluid in the chest and abdomen had resolved its-self with only the fluid under the skin remaining!
We attended the larger hospital at 30 and 34 weeks, and finally we found doctors willing to consider the possibility that our baby might survive. In addition, the cystic hygroma collapsed at 34 weeks, leaving behind just excess skin. We started buying all the things we would need for the baby at this point. Although we had always hoped our little girl would survive, we finally reached a stage when it seemed like it was actually going to happen, that our baby would be born alive.
At 38 weeks, on the 26th May 2010, I was given a c-section because the baby was breech. The sound of her crying was just amazing. I couldn’t believe she was really here, and I could hear her! She was rushed away to the special care unit and then later on to the children’s hospital. The diagnosis of Turner Syndrome was confirmed, and we were informed that she also had a cleft palate. However three scans of her heart showed that while her heart was abnormally structured the co-arctation of the aorta was no longer present and she did not require heart surgery! After nine days she was discharged from hospital and we took her home. I can’t even describe how amazing it was to walk out of that hospital with my little girl, alive and well!
We have named her Rosanna Mae, Rosie for short after the little girl who gave us hope. Now at nearly 10 months only, Rosie is a beautiful, happy baby who gives us joy every day. She has had two operations, one for her heart, and one for her cleft palate and both times she reminded us of what a strong and determined little girl she is.
We are so grateful for our little miracle who beat the odds and defied expectations.
Before you read the following story, I recommend you read “The Hard Stuff”. Paige is a young mum, her second child is due almost any day now. Paige lost her precious daughter Abbigail to the nightmare of hydrops. Her story showcases amazing strength and character from someone most would assume would not be old enough to handle motherhood, let alone the heartache of burying a child. Thank you for sharing, Paige.
In December 2009 I was just 16 years old and found out I was 3 – 4 weeks pregnant. It was a shock to my whole family, but I decided to stand up and accept my responsibilities and raise the baby as best I could. I was excited like any mum would be, buying little bits and bobs for my baby. My family accepted the fact that I was pregnant, and started to look forward to a new baby in the family. I finally got my scan date through and I couldn’t wait to see my baby for the first time.
The day finally came and I laid on the bed and sonographer put the probe on my belly and there was my baby. So small with hands, feet, legs, arms, a belly and a head, staring straight at us. I had the biggest smile on my face. That was MY baby, my baby that I would care for. Nothing was said throughout the scan. The sonographer was focusing on my baby’s head a lot, but I didn’t think anything of it. Then she turned the screen off, handed me some photos and said “I’m sorry, your baby has a Cystic Hygroma.” I had no idea what this was, and when they explained it to me it was like my whole world ended. My little baby was poorly and I had to decide whether I would carry on the pregnancy or not.
I was sent to a consultant at a bigger hospital and he explained to me that babies with Cystic Hygromas could have a chromosome problem such as Down Syndrome, Turners syndrome, Edwards Syndrome and others. He gave me three options.
2. CVS Test
3. Do nothing.
I decided to do the CVS test to see if my baby had the problems they talked about. My results came back as positive for Turners Syndrome (Turners Syndrome exclusively affects girls), so of course I was having a little girl. We knew a little bit about Turner Syndrome, mainly that not many girls survive and what sort of problems they have. When we found out what was wrong, I had to decide again whether to carry on my pregnancy or not. I couldn’t terminate my baby, I knew the sex, I’ve seen her on the screen, I’m going to let her decide her fate. My mum started looking on the internet for support groups but we couldn’t’ find anything. But then at 19 weeks we found Rosie’s story, and then a Hydrops Support group on Facebook, and that helped me a lot.
At 17 Weeks we found out Abbigail had hydrops around her heart, Lungs, Abdomen and under her skin. After that I was scanned every week. At 19 weeks I turned 17 years old. At 20 weeks I found out that Abbigail had a heart defect, and that her aorta was smaller than it should be and that she would need an operation to repair it when she was born. At 22 weeks & 2 days I found out Abbigail had passed away, and my life ended. Even though I knew that she had only a 5% survival rate I had so much faith in her, as did other people.
On the 22nd April, 2010 at 7.11pm I gave birth to my angel. She was 1 Pound 4 Ounces and she was perfect. We had Abbigail blessed. Leaving the hospital the next day without my daughter was so hard. On the 30th of April, I buried my daughter with my Grandad. I was the one who carried her little coffin to her grave, something I didn’t want to do. It was the hardest thing I’ve ever done in my whole life. I was 17 years old, only a baby myself and I had to bury my child.
11 Months on I understand what a healthy baby means and I help other mummies through losing a baby. I support them the best I can. I will never take anything for granted again, and I’ve learnt that health is the most important thing in life. There isn’t a day that goes by, that I don’t think about my little girl. Rest in peace, Abbigail. I miss you and love you forever.