The Miracle of Marley – ptII
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