Since our 19 week scan we have known our daughter has some type of rare condition. At our 19 week scan she has clubbed hands, feet a recessed chin, fluid in her chest (which is around her heart and lungs) and she has very little movement. I did have a Amniocentesis done, were they draw fluid from the amniotic fluid and had it tested for chromosome abnormalities in which the tests came back negative.
We went back in at 21 weeks to try to get a better look at her heart and at that point she developed fetal hydrops which is basically fluid in more then 2 spots in the baby. So now she does not only have fluid in her chest but now she has it under her skin and unfortunately its severe. Her heart still looks great and showing no distress from the fluid and her brain doesn't seem to be affected either.
They believe she has a very rare condition called Arthrogryposis Multiplex Congenita. 1 in 3000 births babies are born with this and there is over 300 different types. This is what is causing her to have the club feet and hands. But because she has developed the fluid within her they believe she has a rarer type of Arthrogyposis and it might be genetic. All of these diagnosis is still very unknown because there is nothing we can test while she is inutero.
Unfortunately the Drs have a poor prognosis for her and if she lasts till birth she probably won't last long because her lungs most likely not have developed correctly. We started to see a Hi-Risk Dr at Motts Children Hospital at UofM because they have a great NICU for her if she is born. For now I go to weekly heartbeat checkups and when I feel ready again I will get another ultrasound to see her progress (hopefully), I am thinking around 28-30 weeks.
This is the hardest thing that Carl and I have ever gone through but were each others support and we know right now her faith is in Gods hands. Were not given up hope on her and praying she will prove all the Drs wrong. Miracles can happen and were hoping she will be one!!
Keep her in your prayers please!!!!
