Anyone dealin' w/ an interrupted Aortic arch ???

[luvmybabyblues]

So we had a fetal echo done . We were there for about 2 1/2 hrs. Dr says she has an Interrupted Aortic Arch. He side while she's inside everything is fine but I will need to deliver in Albany Med and she will have to have immediate surgery. Apparently w/ this diagnosis he should have also seen a hole in the heart but that was not seen. I have to go back 2nd wk in Sept and he'll do another Echo to see if anything has changed. He did mention that we could do an amnio to kno for sure but he said it wont change anything becuz theres nothin' we can do for her til' she arrives. We had the amnio done and are currently awaiting those results. Cuz Doc also said she might have DiGeorge Syndrome. Has anyone gone thru this ??? Its a total shock becuz we thought everything was goin' great and then we find this out. Im scared to death to be honest. The thought of our baby girl needin' surgery so soon after delivery freaks me out.

[VLY]

*hugs*! My SD has digeorge syndrome... feel free to message us if you want to talk :(

she had immediate heart surgery when she was born to close the hole and also to insert a pig valve. from what my husband says it was rough but they got through it. She is going soon to have her first replacement surgery.

[Laceylu5]

My son had a coarctation repair and an asd patched....He has partial digeorge syndrome (mostly the immunology aspect of the syndrome)...I really thought he was the only one!!  Ugh its awful, you just don't know what to do for them!!!  The surgery was terrible being a mother and watching your baby go through what they go through, but they pull through with the help of amazing doctors!!!  You have to completely trust the doctor though, I had about 6 fetal echo's during my pregnancy but my son was not actually diagnosed with the heart defect until I was 36 weeks pregnant, and then I felt like I was in a whirl wind ... I was delivered at 39 weeks, and they spent over 2 hours doing an echo on my son the day he was born to decide what exactly needed to be done!  I had and still have complete faith in the doctors (at Children's Hospital in Boston)...My son is now 2 (almost 3 ahhh!!!), he doesn't keep tetnus or pneumoccocal vaccines, he has already been boostered once, and will probably need one very soon...he also has low T-cells, but they function...he has asthma...and his pulmonary arteries are not in proper order going to the heart, but go to the correct side!!!  Its ALOT of doctors appointments, but I'm in hopes that one day he will outgrow some of this stuff...or they will be able to fix my baby!!!  I am always looking for other parents to chat with about different things that are going on in my sons medical history....Its so frustrating and sad to see such a young child going through everything...please feel free to contact me if you need someone to kick ideas and frustrations off of!!