Need help and clarity

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My baby girl was diagnosed with TOF at 25 weeks old. I'm currently 30 weeks. We have know since 20 weeks that something is wrong with her heart. I have been such a wreck because everyday I fear that when she is born, that there will be other issues that I'm unaware off (i.e. Downs or digeorge). On top of knowing she will more than likely need surgery. My husband refuses to let me get the amino so everyday I just think and worry. She is currently measuring in the 23rd percentile and that also worries me. Has anyone been in a similar situation or give a few words of encouragement? I'm in desperate need of positive words and hope.sad

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  • Posted

    Hi, 

    First of all, dont stress yourself out too much. My little boy is now 4 months old and was  born with TOF. He was diangosed 2 days after birth, and we had no idea while I was pregnant. It is terrifying, and there is nothing I can say to you to make it less scary. BUT, i can tell you that this little boy is the best thing that has ever happened to me. He had his complete repair on 1/24 and is now sitting in his chair next to me babbling about something while his entire hand is in his mouth. You'd never know he went through anything, unless you saw his scar. There is light at the end of this tunnel, and it really does get better. 

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    • Posted

      Thank you so much for your comment, totally made me terry eyes. It was a much needed encouragement. If you don't mind me asking, did your little guy have any other genetic or chromonsomally issues?

      That's what I worry about the most...not being prepared for that.

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    • Posted

      Hey!

      Trust me, I worried about that so much too. I can't tell you how many times I called his cardiologist and asked. But no, he doesn't have anything else. His cardiologist explained it like this... babies with genetic disorders usually have heart defects, but babies with heart defects don't always have genetic disorders. I hope that helps, I know it probably won't ease your mind but try to stay positive. His cardiologist said that there are distinct facial features, hands, and feet that would should this. Also, the location of the thymus gland (which is seen during open heart surgery) can also indicate if there is a genetic issue as well.

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    • Posted

      Did your cardiologist ever give you a reason to as why he got It? my cardiologist hasn't ever really told me. He stated "it just happens". How was your little guys TOF was it on the mild, moderate, or severe spectrum when it came to TOF?

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