Has any mothers experienced having a baby diagnosed with this cogenital heart defect? Or know someone who has a baby who has survived this? I just found out on my last screening that my baby has a hole in between its four chambers and the left side of the heart may be more narrow which will cause the heart to work harder. It's the saddest news I have ever heard in my life and this is my first baby I am 17 weeks and I am scared to give labour now because of this news. I am going to get further testing with a cardiologist. I am only 21 years old and hoping something can be done or I'll know exactly what I am dealing with. Either way I am keeping the baby and have been offered the amniocentesis two times by a obstetrician but I refused to do it as I know it could endanger my baby. My wish for my birthday is that baby will be ok and I guess there is a possibility that bubba has downsydrome but I will love my baby no matter what.
Atrioventicular Septal Defect
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kit10grl
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Hi 
I was where you are 26 weeks ago. My baby was diagnosed with ASVD and coarctation ofthe aorta (a narrowing in one of the branches of her heart.)
Its so scary, i was terrified through most of my pregnancy and had loads of other complications too. At birth it was discovered babys nose was blocked too.
We eventually decided to have the amnio at 33 weeks once the miscarriage risk passed as we had a few other factors for Downs syndrome and wanted to be prepared. It wasnt as bad as i expected it to be, and it came back clear for all genetic disorders.
But there is more good news.
She had open heart surgery at 8 days old. Your LO might not need that it is possible it could be fixed via keyhole surgery it depends entirely on the exact location of the defect and the surgeons preferences, it wont be determined until after baby is born when they can get better views of the heart.
Our LO survived her surgery, and recovered really well. we are being transfereed back to our home hospital tomorow but the only reason were not going home as LO has problems feeding due to her nose issue nothing to do with her heart.
We are staying in a ronald mcdonald house near the hospital and another family here had the same issues as us and there baby was discharged home four weeks after her operation.
It might not seem like it now but its good news they found this defect now as often it can be missed until after birth when baby gets sick, this way they can be prepared to help straightaway. You may not need immediate help depending on the seriousness of the hole our surgeon said if LO only had the hole he would have left it till she was a few m,onths older as it wasnt a large hole.
If you want to ask any questions feel free, im by no means an expert but will try to help best i can. Ive not included the scary parts of the statistics of the operation itself as i was well prepared to hear them when i was told and obviously our heart defect was a little different to yours but if you'd like to know the odds he gave us I can (they were better thsan i thought).
Also my biggest fear was what my little girl would look like with a scary horrible scar on her chest, but it was nothing like i thought. I took pics most days to see it healing I can let you see those as well if you like so you can see its not all bad.
Hope i helped a bit, its such a scary time but youll get through it.
Oh and DO NOT GOOGLE, google is not your friend. The only things you will find are worst case scenarios, dont do it.
The pic is me and my LO three weeks after her heart op.
I was where you are 26 weeks ago. My baby was diagnosed with ASVD and coarctation ofthe aorta (a narrowing in one of the branches of her heart.)
Its so scary, i was terrified through most of my pregnancy and had loads of other complications too. At birth it was discovered babys nose was blocked too.
We eventually decided to have the amnio at 33 weeks once the miscarriage risk passed as we had a few other factors for Downs syndrome and wanted to be prepared. It wasnt as bad as i expected it to be, and it came back clear for all genetic disorders.
But there is more good news.
She had open heart surgery at 8 days old. Your LO might not need that it is possible it could be fixed via keyhole surgery it depends entirely on the exact location of the defect and the surgeons preferences, it wont be determined until after baby is born when they can get better views of the heart.
Our LO survived her surgery, and recovered really well. we are being transfereed back to our home hospital tomorow but the only reason were not going home as LO has problems feeding due to her nose issue nothing to do with her heart.
We are staying in a ronald mcdonald house near the hospital and another family here had the same issues as us and there baby was discharged home four weeks after her operation.
It might not seem like it now but its good news they found this defect now as often it can be missed until after birth when baby gets sick, this way they can be prepared to help straightaway. You may not need immediate help depending on the seriousness of the hole our surgeon said if LO only had the hole he would have left it till she was a few m,onths older as it wasnt a large hole.
If you want to ask any questions feel free, im by no means an expert but will try to help best i can. Ive not included the scary parts of the statistics of the operation itself as i was well prepared to hear them when i was told and obviously our heart defect was a little different to yours but if you'd like to know the odds he gave us I can (they were better thsan i thought).
Also my biggest fear was what my little girl would look like with a scary horrible scar on her chest, but it was nothing like i thought. I took pics most days to see it healing I can let you see those as well if you like so you can see its not all bad.
Hope i helped a bit, its such a scary time but youll get through it.Oh and DO NOT GOOGLE, google is not your friend. The only things you will find are worst case scenarios, dont do it.
The pic is me and my LO three weeks after her heart op.
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Hello,
Yes my son was born with CHD. He had a VSD, ASD,(same as yours) and a coarctation of the aorta. Some of the holes between the chambers heal on their own and some require surgery. My son obviously needed surgery. He had open heart surgery at 11 days old. Spent 6 months in ICU due to complications. But he is a thriving 4 year old! Btw 1 in 100 babies are born with a congenital heart defect and only 20% of those will require surgery. So keep your head up and trust that your baby will be just fine.
Yes my son was born with CHD. He had a VSD, ASD,(same as yours) and a coarctation of the aorta. Some of the holes between the chambers heal on their own and some require surgery. My son obviously needed surgery. He had open heart surgery at 11 days old. Spent 6 months in ICU due to complications. But he is a thriving 4 year old! Btw 1 in 100 babies are born with a congenital heart defect and only 20% of those will require surgery. So keep your head up and trust that your baby will be just fine.
louise2710
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I am another heart Mummy. My LO had co-triatriartum and we found out at 8 months old!
Its bound to be very scary for you but on the bright side, at least they know about the issue and they can fix it quickly, without any unnecessary suffering for your LO.
THinking of you! I know its an awful time!
Its bound to be very scary for you but on the bright side, at least they know about the issue and they can fix it quickly, without any unnecessary suffering for your LO.
THinking of you! I know its an awful time!
syberspaced
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My baby girl was diagnosed with complete AV Canal when I was 20 weeks. I had already had amnio at 16 weeks and there are no chromosomal defects. I had to change hospitals as I live in the middle of nowhere, and I have had 2 appts with the pediatric cardiologist, and I have met one of the cardiac surgeons (2 will perform the surgery) and although I have been given many scenarios but they really want to do her echocardiogram at birth for the best views. I understand how terrified you are feeling, I will keep you and your baby in my prayers.
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