When I was pregnant, I had two special ultrasounds done by a pediatric heart doctor. It could be seen that Lilly had a hole between the bottom two chambers of her heart. (Unfortunately in a place that it is very rare to close on its own.) The majority of Trisomy 18 babies apparently have this heart defect. (Called ventricularseptal defect, or VSD.) We learned that Lilly would need open heart surgery by the time she was 6 months old to correct the problem. (A patch would be put in over the hole.) If she did not have the surgery, she would eventually suffocate because her lungs would have to work too hard. We learned that the surgery was pretty routine and had a very high success rate.
Yesterday I learned that those same doctors have refused to perform the surgery for our wee girl. She is no longer a candidate, in their eyes, because it was confirmed she has T-18. They feel the anesthesia part makes it "too risky." I say "too risky for who?!" If our baby is going to die without the surgery, doesn't that make it worth the risk? (Note that S.O.F.T., a T-18 support group, gathered data and concluded that T-18 babies tolerated anesthesia well. The majority that had the heart surgery survived.)
I find this baffling and frustrating. Yet I was not really surprised as I continually read that parents of T-18 babies often have to fight to get treatment for their children. (These children are often labeled as "incompatible with life.")
In my handbook from S.O.F.T. there is a list of hospitals around the country that performed this needed heart surgery on T-18 or T-13 babies. So if we can't find anyone local to do the surgery, Lord willing we will travel to wherever we need to go to get Lilly's surgery.
Thankfully it's not as hard to get an echocardiogram scheduled. (A sonogram of the heart.) Lilly has one scheduled for next Monday afternoon.
Now to end on a happy note: Lilly has gained an ounce!!! The scale this morning said 4 lbs. 15.5 ounces. Thank you God! :)