riagirl87
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riagirl87, July 30,  2018  10:48am EST

Road to recovery

Hi everyone! My son Jonathan was born with Partial Anomalous Pulmonary Venous Return, Coronary Sinus Type and diagnosed 2 days after his birthday. He had open heart surgery to fix the repairs when he was just a month old (he’s 6 weeks old as of Friday) and is doing fantastic! I wanted to reach out so that if any parents posting on here also have children with this heart defect, feel free to reach out to me. Although everything with Jonathan is fine, it would have been nice to have the support of someone who walked through the journey before we did and I want to be that support for someone who is in need of extra support.

2 Replies
  • AHAASAKatie
    AHAASAKatie, July 31,  2018  9:11am EST

    Riagirl87 welcome to the support network and for wanting to help support other families! We have another member that posted about her infant son in the heart valve section of the site. If you, and another other Support Network member would drop a note of encouragment to the family that would be excellent and most apperciated! Best Katie   

  • celliott1131
    celliott1131, August 12,  2018  6:05am EST

    Hi riagirl87!  My almost 2 week old son, Sawyer just had surgery for Total Anomalous Pulmonary Venous Return this past Thursday.  His was diagnosed after 1 week in the NICU after birth.  He is also on the road to recovery--still very early but doing well.  He is still on the ventalator, they are hoping to take him off Monday or Tuesday.  I am so glad your son is doing well!  It's so good to hear about success stories especially when you are currently going through it.  

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