Anyway, they confirmed what we already suspected and then talked about treatments and implications. Baby B's heart has 2 problems rolled into one.
The heart on the left is a normal heart. The heart on the right has an atrioventricular septal defect (AVSD). There's a hole between the 2 bottom chambers of her heart. So, the oxygenated blood mixes with the de-oxygenated blood and isn't sent to the right places. ADDITIONALLY(not shown in the picture), her left ventricle (which pumps oxygen rich blood to the body) is too small to work properly.We already knew the left ventricle was too small. We didn't know about the hole between the ventricles. The small ventricle is the more serious problem. The surgeries correcting that will correct the AVSD, too.
She'll need 3 surgeries - the first before she comes home from the hospital, the second when she's 4-6 months old, and the third when she's 2-3 years old.
She's fine as long as she's still in my tummy because she gets extra oxygenated blood through the placenta. She'll be blueish when she's born. She'll be taken to Primary Children's NICU and cared for there.
-45% of kids with down syndrome have AVSD - ...so we'll put that in the maybe category.
-for reasons unknown to me, kids with congenital heart defects have to brush their teeth more often to prevent infections in the heart valves.
As an added bonus, the cardio team threw in heterotaxy (situs ambigous)--some of her organs are on the wrong side of her body. My perinatologist looked carefully at it today, and thinks it's more likely that she has situs inversus which is where all her organs are reversed - a mirror image of where they should be. This would make our twins "identical mirror twins". We just keep hitting all the low odds! (Haqon wants me to buy lottery tickets!)
heterotaxy would require surgery to make sure there's no danger of intestinal blockage. Situs inversus is kinda cool but not a problem - lots of people have it w/out even knowing it. The biggest problem is your symptoms are on the wrong side of your body. So you could be telling your doc about pain from appendicitis, and he might think it's nothing serious because your pain is on the wrong side for it to be appendicitis.
So...they explained all of this to us.....and then asked us if we'd take a test to determine our stress level. LOL. I don't know about Haqon, but I scored pretty high :)
Thank you for your support and prayers--it means a lot :).
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REMINDER: Beautiful Rabbit reads your comments. Please don't reply with anything that's needlessly gloomy or worrisome. Thanks :)
3 comments:
We're praying for you! Thanks for keeping us informed. Lucy and Hannah are mirror image identical twins...I never asked about their internal organs. Their hair parts on opposite sides and the opposite teeth erupt at the same time (within 3 days of each other). I could have sworn Lucy was left handed, she couldn't cut with scissors for months after Hannah learned how. Finally she got it. I think she trained herself to be right handed. Fun stuff to watch!
Jen
Wow, does that mean that Baby B will put her left hand over her heart, which is on the right side of her body, when she says the pledge of allegiance?
I've never thought that was possible. It's amazing what you learn every day.
We keep praying for you and your babies.
Hi there, How are your twins now? Praying for you too! I have a 7 month old little angel with similar CHD's. She has AVSD, Pulmonary Stenosis, Dextrocardia (which means just her heart is on the right side) and Transposition of the great arteries. She is due for her first surgery in the next few weeks. God gives us grace for each new day, and we get so much joy from our little girl! Hope all goes well with your little one. Please keep me posted. check out www.littlehearts.org
Sam
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