A less than 5% chance. Rosanna Mae
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.