26 weeks...another update

Well, we just got back from B'ham, where we had another u/s done. Good news first: her heart and brain still look great. And it doesn't look like the liver is inside the omphalocele. Bad news: her condition may be way more complicated than we had originally thought. The perinatologist thinks she has cloacal exstrophy, which is a very rare congenital birth defect. We aren't even sure if it's a girl (hopefully it is, b/c things sound way more complicated if male genitalia are involved). The reasons the doctor suspects it's cloacal exstrophy is b/c her pelvic area is wider, as if during early development, that area didn't fuse together properly. It was even apparent to us on the u/s when we looked at the spinal column. As it reaches the sacrum, the parallel vertebrae curve outward. Omphaloceles are also a result of this condition. She cannot see the bladder, which she suspects is because it is split in two. We saw no opening through the skin, so spina bifida is not probable.

In regards to her extremities, the left foot doesn't look severely clubbed. The right foot was too hard to see, but she is banking on it being severe and irreparable, mainly b/c her fibula isn't present. (Yes, a slightly minor detail they failed to notice at the last u/s.) Without a fibula, obviously her Achilles tendon and whatever else can't function properly. Her right calf is also smaller than her left, so she assumes there is less muscle mass, as well. I can't exactly imagine what not having a fibula is like, but the likelihood of her having use of that leg seems minimal.

So, our priorities are to safely deliver her and have immediate surgery on her omphalocele (although, this may not be possible...her abdominal area is measuring small, so there may not be room initially for whatever organs need to be squeezed back in). In addition, they need to fuse the two halves of the bladder together (this also needs to be done to the uterus, clitoris, penis, or whatever else is involved). Our other major concern is making sure there is proper urine and bowel output...often with this condition, the rectum is closed, and there are issues with the nerves controlling the lower urinary tract. The clubfeet will definitely take a back burner until she is stable.

But on a brighter note, she looks beautiful. We saw a wonderful profile of her face, and she looked just like me. ;-) I feel her moving around constantly, and we are so anxious to finally meet her. We will most likely deliver in B'ham b/c they have the only pediatric urologist in the state. It will be nice to have a pediatric neurosurgeon available, too. I asked the perinatologist if there are any physicians in the U.S. who are more experienced with this type of diagnosis, but she thinks it is too rare for any one doctor to be considered an "expert".

So, please keep praying. I'm sorry if my post doesn't make a lot of sense. Hopefully, we'll have more concrete answers soon, although I'm guessing we won't know what's really going on until she is born.

Thanks again and take care,
Michele