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Genetic Heart Defect Saddie+1 Due September 24; West Chester, Pennsylvania 11 posts
20th May '12

Just found out my daughter will have congenital heart defects. Its very hard and stressful. Has anyone gone, or going through this?

Danielle Leppo Due July 10; 48 kids; Pennsylvania 302 posts
17th Jun '12

My little girl has a large VSD and possibly Heterotaxy. I go back on Tuesday to see if she does have it. It's been a lot of unknowns with this pregnancy, but I got to Johns Hopkins so I know she is getting the best care that she possibly can.



How is everything going with your pregnancy? Anything new?

Saddie+1 Due September 24; West Chester, Pennsylvania 11 posts
18th Jun '12

Well i had a cvs all those results came back fine.
i went to childrens hospital of philadelphia and they found 4 things that questioned them and made then want to see me back. due to leaking and thickness.
i then had an amnio and those results came back normal .
they sent out more testing on my amnio fluid called a micro ray analysis and they came back fine. i go back tomorrow to check the measurements of the baby.
when i went to my 20 week ultrasound they said she was underweight.
plus a cystic hygroma which is excess fluid behind the neck. that doubled instead of getting better. so im just really stressed out.

Ashley P-c 3 kids; Cornwall, Prince Edward Island 70 posts
19th Jun '12

I found out a few months ago that my baby girl shows she has congenitals heart defects. Tricuspid Atresia and VSD with greater then normal vessels. I am being admitted to the IWK in Halifax 3 weeks before due date so she can be monitored, she will be in the NICU following birth and will have a surgery by 2 weeks old called Pulmonary Banding.

Saddie+1 Due September 24; West Chester, Pennsylvania 11 posts
19th Jun '12

They havent pin pointed anything yet with me. I'm 26 weeks today go back to chop in a week or two . The ambilical cord only has 2 vessels instead of three.
There is leaking from the .right atrium to the right ventricle and . if thickness gets. worse then the blood flow to her lungs could stop . theres also a bright mark on her heart that was showing up on the ultrasound, but they werent as concerned as they were with everything else. I just dont get how there saying theres problems but everything i get done comes back fine. its really stressful.

Danielle Leppo Due July 10; 48 kids; Pennsylvania 302 posts
23rd Jun '12
Quoting Saddie+1:" They havent pin pointed anything yet with me. I'm 26 weeks today go back to chop in a week or two . The ... [snip!] ... else. I just dont get how there saying theres problems but everything i get done comes back fine. its really stressful. "

I am sorry that you are going through this! It really is a stressful time, but have faith in your little girl and the doctors taking care of her. You are going to a great hospital. I really hope the cystic hygroma disappears as well.



I just went on Tuesday and they aren't exactly sure what she has and won't know until she is born so they can give her an echo. They are thinking that she has left sided heterotaxy and the VSD is still there.

Saddie+1 Due September 24; West Chester, Pennsylvania 11 posts
24th Jun '12

Yeah they just told me tuesday that there will be no diagnosis til she is born.
Hopefully when I go back to chop on the 2nd for my follow up fetal echo it will show something and maybe I can get some type of diagnosis, or relief, or answer. Its very stressful