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 week 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 has a large cyst at the back of the head and neck which means 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 and discovered it was most likely something called a cystic hygroma. On its own, it seemed like the baby might have a small chance of surviving. According to what I read though, a baby with a cystic hygroma often develops fetal hydrops, a condition described as 99 to 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 about it. To make matters worse, the CVS couldn’t 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 last 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 that 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 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 that 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 the 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 wouldn‘t 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 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 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 beating away still. A joyful moment! Reaching the half way mark felt like a great achievement. Although, 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 from fluid leaking from the spine or brain but which also resolved itself and a low level of amniotic fluid which persisted.
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 that 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 the baby no longer had fetal hydrops! The fluid in the chest and abdomen had resolved itself 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 would 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 that 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 a month old, Rosie is happy at home and doing well. We are so grateful for our little miracle who beat the odds and defied expectations.
