Update on Jonan

Jeff and I wanted to update you on our conversation with the specialist yesterday. She called to see how I was doing and give us an update on Jonan. Since we saw her last week she has done some more research on Jonan and consulted more specialist about our unique case. The leading diagnosis for what they are seeing is something called Amniotic Band Syndrome. This is where bands form in the amniotic sack and attach themselves to the growing baby and stunt the normal growth in specific areas.  Though the likelihood of this happening in any pregnancy is extremely rare, when it does actually happen it often looks the same as other pregnancies where it has happened. The most common form of this is called Limb Body Wall Complex (LBWC) where these bands effect the head, body, and limb...exactly the way Jonan's abnormalities have been forming. Though the doctors cannot see the actual bands around him, the way his particularly abnormalities are forming having led them to this diagnosis. They often do not see the bands on an ultrasound to come to this diagnosis. 

The cause of this are yet unknown in the medical community. It happens very early on and it completely sporadic. 

So, what does this mean? Basically, this is, as I said before, extremely rare for any pregnancy and the chances of the it happening to the same couple twice are almost none. This is great news for us in our desire to grow our family. The possibility of genetic testing is something we can still pursue, however she did say everything would likely come back normal. As you may imagine, this is great news to us. 

Though this does not change the outlook for Jonan, we have found comfort in having more understanding of what is happening to his little body. Thank you all for your continued prayers and thoughts. We feel this strengthening daily.