Tuesday, January 12, 2010

Update!!!

So here's the update on our situation. We had an amniocentisis done and the diagnosis is Trisomy 18. This means that the 18th Chromosome has three strands instead of 2. For example Trisomy 21 is Downs Syndrome. Trisomy 18 is also called Edwards Syndrome. The picture below shows some of the charactaristics of Edwards Syndrome. If you want more info. you can google Trisomy 18 and go to the Trisomy 18 foundation page, or go to http://www.soft.uk.org/ they also have info on it.

Some t-18 babies have no other structural symptions, but then some have all of the symptoms. They don't know why this happens. They say that 50% of of t-18 babies are still born. of those born alive 10% might live past their first birthday. The average life expectancy is 10 days. Out little guy has almost all the symptoms. Perhaps more. he has:(for those who may be squimish you can skip the next paragraph.)

He has fluid on the brain. Some of his brain has developed but is under pressure from the fluid, and some parts have not developed. His heart has a big hole in the the ventricular wall and fluid in his abdomen which they say is indicitive of heart failure. But he does have a good heart beat right now. His intestines and possibly liver are on the outside of his abdomen. He has lots of problems and curves in his back. He does have the rocker bottom feet. And it looks like his hands might be attached at the elbows. It's possible he could have a cleft palat but we haven't seen this for sure yet, and his esophogus might not connect to his stomach. We have an ultra sound on the 20th of this month. So we'll hopefully be able to check on these last two symptoms.

Anyway, for now he is alive and well. I can usually feel him moving at least once a day. Sometimes two-three times. After we do a zone therapy session for him I can feel him move a lot more like 6-7 times in a day for a couple days. This is nice. And makes me feel like I'm actually able to help him in some way. I've also found a great group of other t-18 moms on face book. They are in all stages of the journey, Some are like me prego with a t-18 child others, are taking care of their t-18 children. It's encouraging to see these kids living. And others are dealing with the loss of their child. It's nice to be able to communicate with them and know that I am not alone.

3 comments:

amanda said...

you are amazing to be so strong! our thoughts and prayers are with you!

The Daltons said...

i am so glad you have faith and know that this is gods will. i am glad you are doing good i know you will all make it through this. I'm sure your family must be a great help. you are in my prayers

wurtz said...

You guys are in our thoughts and prayers. We love you! That's great that you found a group on FB, it's always nice to have extra support from those who have experienced a similar situation. (HUGS)!