twins / tetralogy of fallot — The Bump
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twins / tetralogy of fallot

My boy/girl twins were born 8 weeks ago. My son was diagnosed with Tetralogy of Fallot, a congenital heart defect, and underwent open heart surgery on the 2nd day of his newborn life. He is home and doing well. His next surgery will take place around 7-12 months of age. It has been a tough road to travel although we feel so incredibly blessed after waiting 2 struggling for 2 years to conceive. Are there any moms/parents out there that has a child with this same condition? My husband and I would love the opportunity to share information and support. I look forward to connecting soon. Thanks!

Re: twins / tetralogy of fallot

  • I am so sorry you and your little one had to go through this but I am glad he is doing well. It's very cool of you to offer your experience to help other people.
    I am still baking the bun, so...for now I will just say all the best to you and your family.
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    Morgan- Profound hearing loss due to Connexin 26 mutation. Bilateral cochlear implants done at 1 year old. Brigid- Severe cuteness complicated by excellent hearing and fuzzy logic.
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  • My kids do not have this but I just want to express my prayers and support for your family. I am an RN and I used to work in a cardiothoracic ICU with kids like this. Fortunately, I know that TOF kids usually do very well. Have  you tried to contact the social services dept at the hospital where he had his surgery? Maybe there is a support group? I'm sure there are other parents who are looking to share their experiences too. GL.

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