I have spent the last two weeks preparing for my baby to die. It was the most concrete thing I could hold onto. I knew the facts. Baby’s kidneys are damaged, leading to low fluid which will cause either stillbirth or the lungs inability to work after birth. I know what stillbirth is; I see how people cope. All my research showed such a poor prognosis, that I couldn’t imagine another outcome.
Today we had an ultrasound by one of the more experienced Maternal Fetal Medicine doctors- he had also done our CVS and fetal echo. I respect him and value his opinion. He gave us a glimmer of hope. The baby’s growth was good- 54% (2lbs 15oz). There was a tiny pocket of fluid- 2cm. It’s not a lot. It’s about what it was the two weeks ago- it had dropped to 0 last week, so its feels like a little improvement. But most importantly, he said the chest looked essentially normal. He has seen ultrasounds of babies with hypoplastic lungs (small, non-functioning) and their chests look like just ribs and heart- not really much for lungs. Our baby’s chest looked essentially normal. There is still no way to tell lung function, but it was a positive sign.
He encouraged us to meet with a neonatologist again to discuss prognosis. He used an online program that could calculate survival based on gestational age- the closest figure he could give was at 25 weeks/1000gm, the survival rate was in the 90% and survival without severe/moderate neurological impairment was in the 70%. These are rough figures and our baby is bigger (1320gm) and further along (29 weeks), which means the numbers would be better. But this is from MFM and based on gestational age. It doesn’t take into account our baby’s poor kidney function, possible poor lung function and other potential complications that come with Down Syndrome. A neonatologist will likely be able to paint a more realistic picture.
It’s tempting to think that this means this baby is going to be ok- but I’m not sure that’s totally realistic either. This baby will have kidney problems, will have breathing problems, will have neurological problems (from Down Syndrome and/or prematurity). This baby still might die. But there’s a chance? I had given up hope, but now I feel like there might be some. It feels scary and dangerous.
For now I just wait til the meeting with the neonatologist- I can’t commit to hope nor despair. I’m in limbo.