Any experience with conotruncal defect of the heart?

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Any experience with conotruncal defect of the heart?

Postby sissygirl2 » Wed Jun 03, 2009 7:36 am

I had an elevated screen for Trisomy 18 come back at 1:10 at 13wks. We did a Level II u/s at 17wks and saw no additional markers, so decided not to do the amnio. Yesterday was the follow-up u/s for the heart. The tech saw some concerns, brought in the maternal fetal specialist for a look and she was concerned as well. We were referred to a pediatric cardilogist for an echocardiogram u/s of the heart. After meeting with the pediatric cardiologist, we were told the baby has a heart defect called conotruncal defect. There are three defects in the heart that will need to be corrected after birth. This will require us to deliver at a hospital like Riley's so surgery can be performed shortly after birth. With the defect, we were advised to do the amnio, which we did yesterday. The FISH results should be back by Friday so we will know if we are dealing with Trisomy 18. If that comes back positive, we will be dealing with having a stillborn baby prior to 30wks. Most Trisomy 18 babies do not make it to birth, and if so, don't survive long after. Please keep us in your thoughts as we wait for the results and try to determine how to move forward with all this overwhelming information.
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Postby Toribear5 » Thu Jun 04, 2009 8:21 pm

lots of prayers coming your way!
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Postby kcpd8 » Fri Jun 05, 2009 12:14 pm

I am sorry you have to go through this. My thoughts are with you and your family. I pray everything will be ok.
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Postby mrsjoh » Sat Jun 13, 2009 7:45 am

wishing you all the best :hugs: it is tough stuff

did they say way type of defects your lo has? The conotruncal heart defects our son has our double outlet right ventricle.

good luck!
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Postby sissygirl2 » Sat Jun 13, 2009 8:12 am

The preliminary diagnosis is Transposition of the Great Arteries, VSD and Pulmonary Stenosis. She later threw in possible pulmonary atresia. We have a follow up echo in a month, then will be seen by the specialists/surgeons at the children's hospital 3 hours from us to get a better idea of what will need to be done. I am definitely overwhelmed and anxious, especially since I will have to deliver that far away from home and be away from family until the baby comes home after surgery/surgeries. I haven't even began to start getting anything ready for the baby, and know just don't even know where to begin.

Thanks for your responses.
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Postby mrsjoh » Sat Jun 13, 2009 2:02 pm

some great heart websites!
www.americanheart.org
www.childrenshospital.org you can look up your condition
www.tchin.org
www.childrensheartservices.org
www.kidswithheart.org
http://www.childrensheartfoundation.org/
http://www.pted.org/ another great site, has very helpful pictures of various defects with lots of info


http://www.childrensheartfoundation.org ... heart.html
you can order a free book about chd

my favorite book- The heart of a Child, very informative! the best I have seen

My Heart vs. The Real World , Max Gerber, awesome portrait photo + stories of heart kids

everything is overwhelming at first, but you can't learn everything in one day, you will be an expert though in some time,
what childrens do you go to ? we are at boston
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Postby PixieB » Sun Jun 14, 2009 12:34 am

I don't know what sorts of programs they have where you are, but you might have something like Ronald McDonald House, a set up where families can stay at or near the hospital with their sick children. You'll still be distant from extended family, but in the least you could have your older children with you.

I hope you get a more positive result from this testing. It's just too heartbreaking to lose a little one, and especially hard when you don't know whether you can allow yourself to get excited about the pregnancy. I've been having a lot of trouble getting excited about this pregnancy knowing how easily it could be cut short, and that's without any complications thus far.

I do hope things get better for you and you get some hope for this little one and yourself.
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