Mended Little Hearts Open Forum

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  • 1.  Upcoming OHS for my 3 year old with ASD AND PAPVR

    Posted 02-27-2024 15:58

    Hi all! New to the group and reaching out to see if there are other families that are going through or have gone through open heart surgery to repair both an ASD and PAPVR. Upcoming surgery and anxious - would like to connect and learn more about your experiences and outcomes.

    Jennifer Stanton

  • 2.  RE: Upcoming OHS for my 3 year old with ASD AND PAPVR

    Posted 02-28-2024 08:45

    Dear Jennifer,

    I'm sorry your little one has to have surgery.  I wanted to respond yo give you encouragement and hope.  I'm an adult who was born with Tetralogy of Fallot which involved four abnormalities with the main two being a hole in my heart VSD and pulmonary atresia that blocked my pulmonary valve.  I'm grateful to say that I had surgery for full repair 50 years ago!  I was 6 years old and the doctors and nurses were amazing!  I have lived  a very normal life by participating in dance training and other activities and carrying and delivering two healthy babies.  I have a leaky pulmonary value that is being watched and a benign heart arrhythmia that started about 8 years ago but is controlled with medication. This is why it's important to continue being watched by congenital cardiologists even into adulthood.  The doctors and surgeons now can do even more to help mend our hearts than they could 50 years ago so I have great hope for a good outcome for your little one.  I have so much confidence in our congenital cardiac teams!  I will pray for your little one and for you.  I realize now, as a mom, that my congenital heart defect was hardest on my parents.  Take care of yourself too.

    Tina Marshall
    Pittsburgh, PA

  • 3.  RE: Upcoming OHS for my 3 year old with ASD AND PAPVR

    Posted 19 days ago

    2 of my kids have an aortic valve fitted, one has a metal aortic valve and the other has the on-x valve fitted, we went through surgery last July with my youngest and she was home after just 6 days which was a huge shock to the system in itself

    sending prayers and love and know you're not alone 

    Stacey Wright