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January 2016 Moms
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ToF Diagnosis

ah1013ah1013 member
in January 2016 Moms
Hi everyone! I know I don't post here a ton, but I do read a lot and offer help when I can. I am a FTM so I do not have much help to offer. But I have enjoyed reading and learning though all the posts. I have also been dealing with tons of appointments lately. We found out our baby has Tetralogy of Fallot, a two vessel Umbilical cord and will need open heart surgery shortly after being born. We have to follow up with cardiologists, deliver in a different hospital, and keep him at the hospital much longer than expected. I am just wondering if anyone has experienced this and if you have any tips for staying positive through the pregnancy and for our extended hospital stay?
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Re: ToF Diagnosis

  • ChrissyD1203ChrissyD1203 member
    Gosh no experience, but sending so many prayers and positive thoughts your way. My friend's baby had massive brain surgery 3 days after birth and is doing amazing now. Have faith and keep positive!
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  • ah1013ah1013 member
    Thank you :) thoughts and prayers are definitely appreciated.
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  • kaym6kaym6 member
    I do not have any info or advice but def sending some positive thoughts and prayers your way for you and your sweet little babe!
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  • jmclean101jmclean101 member
    I actually have ToF!!
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  • ellaxo1ellaxo1 member
    No experience but sending positive thoughts for you and your baby.
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  • ah1013ah1013 member
    Thanks for the kind thoughts everyone!

    @jmclean101 - thank you so much! That is really comforting to hear. I am just worried sick over this poor baby. Doesn't seem fair that he has to go through all this! but I am happy to hear you are doing so well!! Have you had just the one correction? Or were there more surgeries needed later?
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  • jmclean101jmclean101 member
    I had the one surgery and was scheduled to have another one this past year (I'm 21) but was doing so well that it will probably be another 5 years before they even look at another surgery for me.
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  • ainversoainverso member
    I do not have tof nor does my baby, but I do work with children who have medical diagnoses under the age of 3 and I have had several babies with tof. They typically do really well. Hardest part is after the surgeries getting back on track. I would recommend not being afraid to put baby on belly for tummy time once cleared to do so. This will allow baby to continue to develop next development skills without delays. Otherwise good luck and medical care is amazing. Baby should be perfect!
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  • ah1013ah1013 member
    @jmclean101 that is so good to hear! Glad you are still doing wonderfully! Thank you.

    @ainverso thank you - that does sound like something I would totally be scared to do so I will make a point of doing it once he is cleared. I appreciate the kind words and advice!
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