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December 2015 Moms
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Congenital heart defect

lmmakelalmmakela member
in December 2015 Moms
Hello! I've never really posted much on our board yet but figured I'd reach out to see if anyone else is having this experience. I had my 20 week US and my OB found that out baby is likely to have a congenital heart defect known as Transposition of the Great Arteries. We are going for a fetal Echo and meeting with a fetal-maternity specialist next week. Is or has anyone else ever gone through something like this?
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Re: Congenital heart defect

  • ChiccoBeanzChiccoBeanz member
    edited August 2015
    Hey, I'm happy you are comfortable to share this with us and hopefully some of us can help. I'm sorry that you and your loved ones are going through this. I personally don't have experience with this myself and I will keep you in my thoughts and prayers. May I suggest you search "Fetal Echo" and "Congenital Heart Defect" in the search function for our BMB and on the High Risk specialty board. I think I saw some threads with similar questions or titles, and you may find some answers that way. Hopefully this helps. Please keep us posted on you and your LOs health status. 


    ETA: I found this thread. Maybe you will find it helpful.


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  • Mother0fDragonsMother0fDragons member
    No experience here, but I wanted to wish you luck for next week's appointment. You and your LO are in my prayers!
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  • BostonBaby1BostonBaby1 member
    I also have no experience, but I'm sending you thoughts and prayers for a good outcome.
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  • duckinovenduckinoven member
    Appreciate you sharing your experience and hope there will be some valuable info from other posters. Keeping you and your baby in my thoughts and prayers as you go through the next round of appointments and testing. Please keep us updated if you are able
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  • spottedgingerspottedginger member
    You and your little one will be in my thoughts.
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  • cdv2015cdv2015 member
    edited August 2015
    AlejandraN2 said:

    I'm so sorry you're going through this. Although my DD did not have that exactly, she did also have a congenital heart defect associated with the arteries (aortic interruption, persistent fifth arch, severe coarctation of the aorta and cervical arch) - all abnormalities related to the regular structure of the arteries which I believe is what they think your baby has. I would take it one day at a time and wait to see what the pediatric cardiologist says and suggests after the fetal echo. You  may get a different diagnosis after you meet with the specialists, so try not to worry too much (easier said than done i know). 


    If it's anything like my daughter, you will be getting fetal echos regularly till birth (usually every 3-4 weeks) to measure any change in the heart chambers. And if your baby does have the transposition, he/she will need surgery after birth but the good news is that with an early prognosis it can all turn out fine. My baby girl had open heart surgery at 2 days old to correct the abnormalities and now she's a thriving, vivacious 2 year old. So definitely have hope that it will all turn out ok - feel free to PM me if you want to talk more. I'll be thinking of you guys. 
    All of this. My daughter also has/had several heart defects dealing with the aorta, left ventricle, and aortic valve. We had a fetal echo every 3 weeks until birth. Open heart surgery at 13 days old, cath/balloon at 5 months old, and now an echo every few months to check progress.
    Keep in mind that physicians will be brutally honest with you and you may leave feeling more nervous than before you went. However, You will be better prepared by receiving this information. You are your child's advocate and you can make it! Prayers and well wishes to you and your sweet baby!
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  • Marchmellow2Marchmellow2 member
    No experience either. I just want to tell I'll send you positive thoughts and prayers. (((Hugs)))

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  • taysuntaysun member
    No experience, but you and your LO are in my thoughts and prayers.
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  • hplunkett2883hplunkett2883 member
    Sending prayers for your little one. And prayers for strength for you.
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  • VixDecember2015VixDecember2015 member

    Hang in there and stay strong.  By identifying it early, you have the chance to arrange for the best possible care for your baby.

    I don't have any personal experience, but friends of ours had a baby last winter with the same problem.  Yes, she had to have open heart surgery after birth.  Yes, it was traumatic for the family.  BUT she got through it very well and is doing great now.  Wishing you all the best.

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  • keiragannkeiragann member
    Though I don't have personal experience with this type of defect, my DH has a genetic heart condition called Hypertrophic Cardio Myopathy and so we have had to do genetic testing, fetal echo, and meetings with MFM. If you need support please let me know!

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  • ssn109ssn109 member
    I just wanted to chime in with words of hope. My LO doesn't have a CHD, which was great relief...because I do. I had a ventral septal defect and pulmonary stenosis, and would have died before my 1st birthday. In 1983, there were almost no surgeons capable of performing my open heart surgery, but I still managed to get the needed surgery. I'm 32 now, and although I follow up with a cardiologist every year I am perfectly healthy. I may one day need another surgery, since I have a valve that has moderate leakage. But in the meantime I work full time, get plenty of exercise at the gym, and have no restrictions from my heart condition.

    I know this is scary for you, since it's your baby. But cardiac treatment has come far in the last 3 decades and cardiac surgery on infants is much more common and less dangerous. So please, take hope that it will all work out in the end. Just make sure you find a good pediatric cardiologist to ensure the proper treatment#
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  • lmmakelalmmakela member
    I just wanted to thank you for everyone's kind words and prayers. I meant to respond earlier but it's been a hectic week. I really appreciate all of the support and words of advice. I'll keep you guys updated the best I can in case this can benefit anyone else on our board even if they don't feel comfortable posting.
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  • phillytanyaphillytanya member
    This happened to me a long time ago. My daughter was diagnosed with a heart defect known as Tetralogy of Fallot. She had open heart surgery at five months old, she is 19 yrs. Old and fine now!!! I know it's hard not to worry., but try not to worry too much. Things are so much more advanced these days!
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  • kepoolekepoole member
    I'm so sorry you're dealing with this. I'm an invasive heart specialist but I don't work with pediatrics so whereas I studied this in school, I've never assisted in one of the surgeries to correct this. However, I can try to give you some peace of mind that it is something that will be closely monitored until birth and they will know exactly what to do after he/she is born. Statistics are greatly in your favor. I know it's scary, and I will definitely keep you in my thoughts and prayers!
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  • mattkrisjonesmattkrisjones member
    lmmakela said:

    I just wanted to thank you for everyone's kind words and prayers. I meant to respond earlier but it's been a hectic week. I really appreciate all of the support and words of advice. I'll keep you guys updated the best I can in case this can benefit anyone else on our board even if they don't feel comfortable posting.

    Hey, I just search this thread because at my 20 week ultrasound on Friday everything was fine except they could not get a picture of my baby girls aortic arch. They called today and they asked me to come in at my next appointment which is four weeks away and we would look at it again. All four chamber seem fine and the bloodflow is perfect. I had no issues and nothing else showed up on the report. Of course I can go crazy googling aortic arch and heart defects but I would think that if it was urgent I would 1. go to a specialist 2. come in sooner than my next four weeks visit?? Maybe that is just wishful thinking?
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