Down syndrome

20 week scan and hydrops

With the usual nerves before an anomaly scan, we went it. I had a confidence though, we’d done this before with Elisha and all had been perfect, I’d been feeling the baby move a lot for the past 4 weeks and I was feeling great. The 1:29 chance of a baby with Down syndrome was so far at the back of my mind I didn’t give it a second thought. (I realise now that a lot of people would have been more concerned than I was with that chance ratio!!) I truly believed my papp -a level was so low due to me still breastfeeding Elisha and being deficient in zinc so I’d been taking an additional supplement on top of my usual prenatals. I also had an element of ‘this couldn’t happen to me’. I already had a friend who has a son with Down syndrome (hi Tracey and Tyler 😉) so my reasoning was surely the chances of us both having children was impossible lol.

I lay on the bed and breathed the sigh of relief as you see you baby moving around on the screen and hear the heart beat. The scan was mostly uneventful to begin with, the sonographer remained upbeat throughout whilst taking measurements and talking about our baby. The first hint there was anything wrong was near the end of the scan she said, I’m just going to get my colleague to come and have a look at something. I started to feel nervous. It must be something bad right? They only get a colleague when they thing something is wrong. Someone senior came in and sat in silence whilst she scanned.

She finally spoke….there are some concerns with the baby, there is fluid around the babies heart, lungs and brain. It’s something called Fetal Hydrops. I later found out this is the name given to fluid in two of more locations in the body. They also told us the nuchal measurement was now out of a normal range and the femur length were shorter than normal. We were ushered into the ‘bad news room’ to discuss our options. They shared with us that what they had seen could be indicative of a chromosomal condition and that the severity of the hydrops was so much so that they didn’t expect the pregnancy to carry to term. We were offered a termination there and then. Our other options were to continue the pregnancy as normal or to have an amniocentesis to find out if there were any chromosomal condition. I’d always said I’d never have an amnio but when faced with what they were telling me I felt compelled to know what was going on, I wanted to know everything I could about this baby. Maybe by knowing we could look into treatment of the hydrops. I wanted to rule out certain conditions. So they booked us in for an amnio that afternoon. We had a few hours to wait so we went for a walk around the gardens at St Thomas and went for some lunch. It seems surreal now. Matt had to leave to pick up Elisha from nursery so I went in for the amnio alone. I remember saying to the sonographer as I waited ‘Am I going to get to take a baby home at the end of all this?’ and she said ‘No’ as gently as she could. The amnio didn’t take long but it was extremely uncomfortable. The needle seemed huge, I couldn’t look at what they were doing and there was a lovely nurse with me holding my hand. I was told to go home and take it easy. I was in no fit state to return to work so I took the rest of the week off whilst I recovered and waited for the test results.

We were obviously devastated with what we were told at the scan but we held onto faith that we would see a miracle. That Zephy would overcome the hydrops and survive the pregnancy. I was told that the fluid may eventually stop his heart or lungs from developing and I would stop feeling movements. His movements continued as normal and within a month of the 20 week scan the fluid started to reduce until it was back to a normal level. We were so very blessed, many others I’ve spoken to and come across have a different story. I think it depends on the cause of the fluid as to the outcomes. It’s often caused by catastrophic defects to parts of the body such as a heart defect, or caused by a virus. In Down syndrome it can be that, but it can also be the result of the lymphatic system taking longer to develop and it is believed this was the case with Zephy. Once that lymphatic system developed the fluid started to drain away.