The 13 week scan – this is unbelievable!

The first 3 months of my pregnancy were pretty uneventful. I had the usual craving for savoury foods, and definitely felt tired but other than that I was well. I was also surprisingly emotionally stable and relaxed – so much so that I think Rich thought that the best thing he ever did was get me pregnant! I had experienced a miscarriage the year before so was sober in my expectation of the first trimester knowing that it’s common for little ones not to make it. We had been for a 6-week scan, and had the privilege of seeing our child’s little heart beating strongly and full of life.

The night before the 13 week scan, I was suddenly besides myself. I hadn’t been consciously fearing it but I was now emotionally distressed. I consumed 3 endearments and half a litre of coke just to get myself to the scan the next morning. We had an initial chat with the sonographer which didn’t raise any alarm bells and then began the scan. The sonographer could tell immediately that there was something wrong - the baby was swollen, its skin pulled away from the body. She didn’t carry on for too much longer as she wanted to get a more senior sonographer in, but she wasn’t available at the time. We went back that afternoon for a scan with the senior sonographer who told us:

-          The baby was severely hydropic (swollen). The upper side of normal for the fluid behind the baby’s neck for a baby our size is 2.5mm – but our baby’s fluid measured at 12mm.

-          There was a VSD hole in the heart

-          There was fluid in the heart and lung cavities, stomach, and all around the baby

-          The forearm bones could not be detected, the upper arm bone was tiny

-          The femur was short

-          There may be a club foot

-          Appeared to be female
-      That the condition was lethal

The swelling indicates that there is something wrong with the baby’s development. For babies as severely swollen as ours was, the prognosis is very poor. Hydrops has many different causes, but aside from the underlying cause of the swelling, the heart comes under severe strain from all the excess fluid ultimately resulting in heart failure. The complication of hydrops when it is as severe as this is generally considered to be fatal. There were obviously other problems but the life threatening feature was not the hole in the heart or the skeletal concerns but the excess build-up of fluid.

The sonographer was extremely concerned about the condition of the baby and thought it was surprising that I was still pregnant. She said I had an 80 – 90 % chance of miscarriage and called the hospital to tell the gynae on call that they could expect to see me in the next couple of days. She did a CSV to send for testing and said there was “enough here to offer termination”, but she did not put any pressure on us. It was still early in the pregnancy – a pregnancy they did not expect would go much further anyway.

We also spoke with our gynae and a geneticist. The geneticist gave us very helpful counsel right at the beginning by setting our expectations for testing of any sort – she said that the test results and future scans may or may not give us more information. While a diagnosis is helpful for future pregnancies, we may never have clarity on the diagnosis and the condition of our baby was such that prognosis was extremely poor. Our gynae introduced the idea of “reducing trauma” by terminating the pregnancy, an idea we would hear more about further down the line.

My family were in disbelief when I told them. A year before, my sister had given birth to a little girl with Down Syndrome although this was only picked up at the 23 week scan. As a family we had already experienced this kind of difficult pregnancy news – so it wasn’t hard to believe that these things happen, but it did seem unreal that it had occurred to us sisters in such a short space of time! However, we were really helped by what my sister went through. The journey of her pregnancy, birth and life of her gorgeous daughter meant processing many emotions and developing an appreciation for life even when it is not what we expect it to be. So we did not have to start from zero.

We went away for two weeks after the 13 week scan. “Fortunately”, we happened to both be unemployed at that point and had been planning to go away anyway. We had the time and the generous provision of a beach house to go to. There we collapsed and started to absorb the shock of the news of this baby. I could barely go for a walk I had so little energy. Rich took such good care of me. He cooked and cared for me. We read, and cried and slept… and after two weeks we felt we had enough energy to come home. During this time, we were blessed by many acts of kindness – a friend flying in from Durban to spend the day with me, friends cancelling plans and coming over to hear about the scan, others driving out to where we were to deliver meals, people sending us gifts from far away, beautiful letters and phone calls… and we began to appreciate  the beauty of love and friendship that somehow only reveals itself in the most challenging times.