Rosie's Story
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, the cystic hygroma had 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, we found out that the baby had Turner Syndrome. We were pleased with this news, it meant we were having a little girl and after finding Rosie Foster’s website which shares stories of other babies who have survived after a similar prenatal diagnosis to our baby we knew the baby DID have a chance of surviving. After this we had fortnightly scans to check if the baby was still alive, and to see what condition she was in.
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!
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.
At four months old, Rosie had to have heart surgery because the structure of her heart, which hadn’t been expected to cause problems, was affecting her breathing. She has right aortic arch with retro oesophageal continuation. While preparing for this surgery, the consultant discovered another heart problem, where some blood vessels from the lungs are pushing blood the wrong way, into the vessels returning from the brain (I think! I don’t know the name of the condition and information given about it has been a little sketchy). It was decided to go ahead with the planned surgery, and she will return for open heart surgery to correct the newly discovered problem in a few years.
This month (at eight months old) Rosie will be having her cleft palate repaired, which will hopefully improve her feeding ability which at present is very limited.
Rosie is a healthy happy little girl, who gives us great joy and happiness and we are so grateful to God that Rosie survived. She has developmental delays, and a few small problems such as impaired hearing and difficulty gaining weight, but it is nothing serious and we are very proud of her our precious little girl.
By: Laura Dawson
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