Babies with Congenital Heart Defects — The Bump
Special Needs

Babies with Congenital Heart Defects

edited April 2015 in Special Needs
Hi mommys, i just found out at 22 weeks that my baby girl Lyla has a congenital heart defect called Pulmonary Atresia with intact septum. I wanted to know if theyre other mommies here that have, or have had babies with CHD and would like to share their experiences with their child, or their loss. You dont have to get too deep in details, i just need opinions because im in the moment where i have to choose wether to keep baby Lyla and give her a chance, or to interrupt the pregnancy because of the life she would have and her chances of survival. Hope some mommies can relate because it would be very helpful.

Re: Babies with Congenital Heart Defects

  • My DD at three months old needed to have a VSD repair ( it is common for children with Down syndrome, which DD has) We never knew she had a heart defect until we went to see a specialist. I am not going to lie, it was scary but we got through it. We had to go to Boston Childerens to have the surgery and she just had her check up and we do not need any more surgeries and do not have to see the heart dr again for a whole year! This is a hard choise To make. I am here for support!


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  • I am so sorry to hear your news. My daughter had a VSD, ASD, and Coarctation of the Aorta when she was born. They did not see the issue in her 20 week ultrasounds. We were lucky enough to find out on her second day in the hospital before being discharged. She had open heart surgery at 8 days old to fix these issues. She is now a happy, healthy, and very active 2.5 year old.

    I am not all familiar with what Lyla has been diagnosed with. They have come a long way with medicine these days, and it is amazing what they can do and what they can fix. Talk to your doctors, do your research, and that will help you along the way. Thoughts and prayers for you, your family, and Lyla.


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  • My daughter had the same as listed above (vsd, asd, coarctaion/stenosis, bicuspid aortic valve, and diagnosed prenatally and initially after birth with Hypoplastic left heart syndrome). She also has Turner Syndrome. After her birth, the surgeon refused to operate, essentially because of her genetic "disorder". We were sent to CHOP and the Surgeon there fixed her aorta and it ended up, over time, making her left ventricle grow. She would have had two open hearts by now, but has done great with just the one plus a cath/balloon. Our babies are so much stronger than we give them credit for. Hold in there, mama. Sending you love!!
  • My baby was born with a genetic disorder that we did not know about until he was born. Among other issues, his heart defect was tavpr. It was repaired at 3 months. Although the surgery/post surgery was stressful, my son is ok. Hang in there. All of this medical stuff can be overwhelming
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  • My son was diagnosed with CHD at three weeks old. We had many ultrasounds that they would never find in utereo. He had surgery to fix his heart the next day and is thriving today. Once they went into the heart they did bloodwoek and found out he has DiGeorge.
    Baby #1 MC November 2007
    Baby #2 MC June 2008
    Baby #3 Born April 2009
    Baby #4 due date February 2015

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  • My son has an ASD and Coarctation of Aorta. We have routine echos to monitor it but he's doing wonderful. It can be stressful and I worry more some days than others, but I wouldn't trade him for the world.
  • I am currently pregnant with identical twins and one of the boys has this exact same condition.  We saw a specialist at Children's in Omaha, and we felt reassured that he would be ok.  There are lots of things to decide and multiple operations, but the quality of life seems good.  I would highly encourage you to join some support groups.  I know there are a couple on Facebook: Midwest Heart Connection and Little Hearts Matter (specifically for "half a heart" or "single ventricle" conditions).  Children's in Omaha does a Heart Warrior camp where children with CHD go to that is just like normal camp except the counselors are nurses or trained personnel.  I know I am a bit late, but I just thought I would share my 2 cents. I have seen plenty of stories on Little Hearts Matter with the HLHS (worst of the two single ventricles) and those kids seem to have a fantastic life.  It is all about how they are raised and how they see themselves.
  • We found out on Monday that there was something wrong with the baby's heart. This was during the 20-week ultrasound. Yesterday they told us the diagnosis, which is AVSD and will require surgery and also let us know that due to this defect, there is now a 50% chance of down syndrome as well. We are having an amnio done tomorrow and I am scared of the chance to miscarry, but will need to know, as the doctor told us his quality of life will depend on the results. I am sorry for your situation, but please know that there are more of us out there and we are here to support you, even if just over the internet! It is ultimately your decision, but we decided to keep the baby either way (as long as this amnio does not cause any issues). This baby will be greatly loved, even if his life would be brief. Virtual hugs!
  • @NinaLCC no offense but that doctor is very outdated about Trisomy 21.  The quality of life for your baby can be close to the same as any other babies.  Trisomy 21 affects each child differently so there is no way to tell by a blood test what may or may not happen.  My little girl has down syndrome and ended up with a VSD heart patch/open heart surgery around 6 months but other than that is doing pretty well.  (We actually go to doctors less than one of my friends who had a typical baby with no major medical issues.) They also act like they will be so far behind, but that is not always the case, we are within a normal range of our gross motor and cognitive skills but I will admit behind on Speech. 
    Heart surgery these days have come a long way, and we were out within 5 days (we had to wait on a bowel movement) and pretty much back to normal activity after 4 weeks. Little babies heal a lot faster than adults, my little girl was smiling 3 days after surgery.   I know it is scary to have this brought up to you but look for a good surgeon now that you trust and more than likely everything will be okay.  Thinking of you during this time. 
  • My DD is also single ventricle, but she has Hypoplastic Left Ventricle and Aortic arch. From what I understand, there are studies being done to help with the life expectancy of Pulmonary Atresia babies. I do believe I know a mother who lost her son to it, but i also know one who's child is doing well, considering the diagnosis. I am so sorry you are going through this. Feel free to pm me and I can look into what knowledge I have as far as PA. One thing is for sure. Find yourself a top 20 children's hospital for your child to be born at, and find a way to get there. Even if it's far from home, it's worth the fantastic care. I don't know where you're from, but there are options no matter where you are. I know a family from Alaska that travelled to CO for care, and as hard as it was to relocate, or even just be far away from home for the time in the hospital, it was the best decision for them. Also, when you are in the hospital, don't be afraid to make friends. There are people experiencing the same feelings as you, and it makes it better when you don't feel alone. 
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