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Swollen ventricles in brain and hole in heart

Kbalas1018Kbalas1018 member
in High-Risk Pregnancy
I just had my anatomy scan and they found that my baby girl has a small hole in her heart, the ventricles in her brain are a little swollen and she's measuring a bit small. We will be going to see a specialist next week to verify everything and see what it all means. The waiting game sucks. Anyone else have experience with this?
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Re: Swollen ventricles in brain and hole in heart

  • rklinge0rklinge0 member
    Did you have any chromosome testing?Its probably mild ventricular megalolomy ( may have spelled it wrong). That and the hole are soft markers for bigger issues.
    We had the fluid which in itself was only 4 percent chance for chromosome issues.
    Also was everything measuring small or just specific body parts?
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  • andreachristine81andreachristine81 member
    @rklinge0 ... I am sure you mean well, but unless you are a doctor and a genetic counsellor (with results from her specific tests) giving a "diagnosis" like that is really, really out of line in my opinion. If someone had of said something like that to me when I joined this board it would have kept me up at night :(.

    @Kbalas1018, my son had echogenic bowels, was measuring small (in general) and had an undiagnosed heart problem (which was later diagnosed to be a coarctation of his aorta) at my anatomy scan... I was BEYOND upset and scared to death. I had people filling my mind with ideas of what "could be wrong with him..." Made my life miserable for 2 1/2 weeks!!! I had an amnio, was seen by a high risk specialist and two paediatric cardiologists to get to the bottom of his potential health concerns. It turns out that everything that people suggested to me (with totally pure intentions I am sure, trying to be helpful) was ALL WRONG. After the RESULTS of MEDICAL testing by specialists we learned that my baby does in fact have a minor congenital heart defect (which will likely be corrected by one procedure after he is born) and that is it. The fact that he was measuring small and the echogenic bowels were JUST that... He is probably going to be a smaller baby (not too small) and the echogenic bowels can be indicators of NOTHING at the end of the day. Doctor Google and suggestions from unlicensed people who were trying to help made me CRAZY. So even though the waiting game is the worst (trust me, I know), jumping to conclusions will only make the situation worse. At the end of the day, you are far more likely to be on the safer side of the spectrum than the alternative. I hope that everything is ok! Keep us posted :).
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  • rklinge0rklinge0 member
    @andreachristine81 she was asking if someone had been in the same boat. I lived it, without the heart problem. It was a chromosome abnormality. So that was why I asked if she got tested, which I chose not to do. I wasn't diagnosing her was just telling her what they are, which are soft markers.
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  • Kbalas1018Kbalas1018 member
    @rklinge0 I did not choose to have chromosomal testing earlier on. She is just smaller in general... Not specific body parts.

    @andreachristine81 Thank you for that. I'm doing better now but was a mess the other day. I've heard from a lot of people that many times things are found on the anatomy scan that end up being not very serious or nothing at all. I have lots of hope! I'm glad your sons issues turned out to be mostly ok and that they aren't concerned. I believe that is what will happen with our baby girl but it is scary and heartbreaking to think about. I'm just trying to be strong for her and I keep talking to her because I know she can hear me :) I can feel her movements and her heartbeat is strong! I'm just thanking God for her life and trusting that He will take care of it.
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  • andreachristine81andreachristine81 member
    @Kbalas1018 just keep staying positive and if you can stay off of doctor Google!!! He is not your friend :/! Statistically and ratio wise it is FAR MORE LIKELY THAT you are going to have a perfectly healthy baby girl :). Every time you start to freak out, try to remember that. I know it's way easier said than done. Good luck to you sweetie!!
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  • Kbalas1018Kbalas1018 member
    @andreachristine81 thank you so much! You are very encouraging. I'll be praying for your sweet boy!
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  • skfgskfg member
    @Kbalas1018 - as @andreachristine81 said - so much can show up as a potential issue during the anatomy scan and then once you see the experts usually w/better equipment it is less serious than initially presented. My baby has down syndrome and at our anatomy scan there looked to be several serious markers w/the heart and the tech was less than composed. We followed up with a peds cardiologist and it turned to be much less serious then we were led to believe. Partially due to their equipment and partially bc baby was 3 weeks smaller at anatomy scan so they could not see the heart as well as they hoped. Waiting is the most challenging part and my advice is to do what you need to to stay as calm as you can during this period of uncertainty.
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  • nram25nram25 member
    Not with the brain but holes yes. U/S tech believed that my little girl had a couple of small holes in her heart and I was told to come back in two weeks to see if they'd closed, but they still suspected to see them. So the next following week I met with a pediatric cardiologist who said that he didn't see what they were talking about even with her being stubborn and in a face down position, but I have an appointment to see him again next month to make sure everything looks good with her heart overall. I'm being strong and positive about everything because I know in my heart that she's going to be just fine. Best wishes to you!
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  • PlainJane8350PlainJane8350 member
    They found enlarged ventricles at 18 weeks and sent us the following week for a fetal MRI. That MRI was normal, but ultrasounds continued to show enlarged ventricles. Baby was born a couple of weeks ago and, just because we'd had that scare, we opted to have an ultrasound done on her brain before taking her home and that came back fine as well. Ultrasounds aren't the most reliable and different techs will get different measurements.
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  • Kbalas1018Kbalas1018 member
    Thank you all! I appreciate your honesty and encouragement. I'm glad all of your babies are doing well!
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  • Mstrawb1Mstrawb1 member
    Hi everyone! I have a congenital heart defect (CHD) which all of you are describing. I am currently 6 weeks pregnant. Having the doctor tell you that your baby might have one must be scary. But I can tell you that cardiologists have come such a long way, especially from when I was born. I wasn't diagnosed prenatally, so my heart defect was quite the suprise. Feel free to contact me with any questions! I hope everything goes well!!
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