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April 2014 Moms
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Anyone else's baby have heart defect?

cmyers6896cmyers6896 member
in April 2014 Moms
So, Friday we learned our baby girl has a heart defect.. Her aorta which usually goes up and curves to the left, goes right. The doctors who did the fetal echo said in most instances is ok, but also at times a minor surgery is needed..
However, I have to get retested for downs. Baby's fluid has measured low since 20 week scan and she's 2 weeks behind.
Is there anyone else going through something similar? I'm making myself crazy and of course thinking the worst! Need words! Thanks ladies..
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Re: Anyone else's baby have heart defect?

  • baileymama3baileymama3 member
    Oh gosh how stressful! Thoughts and prayers for the best! Sorry you are dealing with this :(
     
    May the Fourth Be With You: Our 5-4-14 Baby: Andrew Joseph
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  • hsabyanhsabyan member
    My husband and I found out after our 20wk ultrasound that our baby girl has a rare heart defect called CCTGA (the lower half of her heart is basically reversed), complicated by a malformed valve that has a significant leak. I've had to change doctors, clinics, hospitals, and completely change my plans and outlook on my entire pregnancy...believe me, I know what you're going through! 
    I have to go in and have an ultrasound every two weeks to check for fluid build up on baby's stomach, brain, and lungs- but so far everything is fine and she is measuring right on time. 

    Her future scares the beejesus out of me.  She will need to see a cardiologist for life, will likely be on meds, and there are multiple open heart surgeries that could be done... it all just depends on how she does.  We are stuck in a "wait and see" situation and it kills me.  There is nothing worse than the unknown, and a first time mom's worries/nightmares/worst-case-scenarios never end- BUT, we've come to terms with everything and are learning to just plan what we can, hope for the best, and educate ourselves as much as possible. Every kick I feel from her reminds me what a miracle she is and how blessed we are to have her. 

    You are not alone in your worry, but it only means that you are already an amazing mom. My best advice is to educate yourself all that you can and join groups or get in touch with people who have children with the same defect or who are in the same situation.  It was really inspirational to us to find facebook groups for people/parents(with children) with CCTGA and to see their success stories and also to see the reality of what is to come. 

    Good luck fellow Heart Warrior Mommy, stay strong! 
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  • jagarner81jagarner81 member
    Our twin baby B has a VSD, small hole in his heart and also may have a small aorta arch that may require surgery. We have had several echos and have another one scheduled for tomorrow. We are hoping to avoid surgery since he is also an IUGR baby and will be underweight when born so surgery would not be an option if he is too small. It is all extremely stressful but know that you are not the only one and hopefully all these babies will fight through this and be survivors!! Keep us posted.
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  • khammond3khammond3 member
    edited January 2014
    Stay strong in your faith and pray. God can change situtations around! Hoping its not major
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