Mended Hearts Open Forum

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Tetralogy of Fallot

  • 1.  Tetralogy of Fallot

    Posted 01-23-2020 22:45
    My daughter is just shy of 2 weeks old and was born with tetralogy of fallot. Any other tof mommas in here that can offer any advice and words of wisdom? Maybe some positivity or even just things to look out for?

    gabby jones
    longview TX
    ToF momma

  • 2.  RE: Tetralogy of Fallot

    Posted 02-20-2020 20:23
    Dear Gabby, 
    I'm sorry that I didn't respond sooner.  I had email trouble and wasn't receiving notifications.  I have a new email address now and just reconnected to the community online.  I am not a ToF momma but I am a ToF survivor, so I wanted to respond.
    First, I'm sorry your little girl was born with Tetralogy of Fallot.  Second, I want to bring you hope!  I am 54 years old now and doing well!  Back in the 60's the doctors didn't do repairs on little hearts until they got bigger.  So, I had a shunt at 15 months to hold me over until my total repair at age 6.  I went on to live a very full childhood with dance lessons and being a cheerleader in school!  I delivered two healthy babies and have been given the blessing of many years of health and happiness!  Not until recently did I need to take any medication and I may need a pulmonary valve replacement in the future to keep up with my busy lifestyle.  Repair surgeries are done much sooner now which will give babies even better outcomes than mine, which was very good!
    You asked about things to look out for....breathing issues.  Is your daughter feeding ok?  How is her color?  Before surgery, my lips and fingernails were always blue due to poor oxygen in my blood.  I had to stop and catch my breath while playing so I would squat and it helped regulate my breathing.  For babies, legs can be bent up to their chest to give the same effect as squatting and help breathing to improve.  I hope you don't have to worry about this as much as my parents did since the surgery can be done much sooner now.  Heart surgery can be scary, but I am living proof that it is worth it!  I have so much hope for your daughter!  My best advice is to focus on HOPE and not fear.  I will pray for your daughter and for you.  You will be in good hands with a pediatric cardiologist at a Children's Hospital.  They are the experts and they work miracles!  Please feel free to reach out to me anytime and you can contact me privately also.

    Take care,
    Tina Marshall
    Cranberry Twp., PA

    Tina Marshall
    Cranberry Twp PA

  • 3.  RE: Tetralogy of Fallot

    Posted 02-21-2020 07:40
    Sorry I didn't see this sooner. I echo everything Tina has said. The only thing that I can stress more, is that you have enormous hope.  I am a survivor too but I have some years on Tina. I am a mother of one and a grandmother of two. I will be turning, dare I say, 69 this June.

    I was one one of those early children when heart surgery was just developed. So stay strong. Your child is in good hands and will grow up to do great things. Reach out anytime. My phone answers 24 hours. Text so I know it's you. Actually, Tina and I met and it was great to share that with someone that I never had as a child growing up.  Stay strong. Keep in touch. We are all here for you. Love, Annette

    annette smith
    saxonburg PA