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Katrina Mae

TAPVC, DORV, HLV, valve regurgitation, Heterotaxy Syndrome; Heart Transplant


It was Halloween 2002, one which turned into a real scare. I went for a "routine" 20 week ultrasound to find out something just wasn't right with our baby's heart. We went to the local hospital and were eventually referred to Children's Hospital of Philadelphia (CHOP) for fetal echocardiograms. It was determined that our baby girl had multiple, severe heart defects.

We temporarily moved to Philadelphia with relatives; for how long, we did not know, it did not matter. I was induced on March 10, 2003 and gave birth to Katrina Mae who was immediately transported to CHOP. She was a miracle already (with so many cardiac issues but she needed no medical assistance, no medication, just monitoring). The echocardiograms confirmed that she had TAPVC, significant valve regurgitation, DORV, HLHS, and pulmonary stenosis. At one day old, we were told that our best option was a heart transplant?a what? We had educated ourselves throughout the pregnancy on open heart surgery and the anatomy but never on transplant. We knew we had no choice and we could learn anything no matter how challenging in order to care for our daughter.

Katrina was discharged at 4 weeks old to our relatives' house in Philadelphia as we waited for her heart. At nine weeks old, we received the call. As we celebrated and were overcome with joy/nervousness/anxiety, we knew there was another family somewhere grieving for the loss of their child. We hope they can feel our endless gratitude to their courage and selflessness.

Twelve days after Katrina's heart transplant, she was discharged. We stayed in the Philadelphia area for six weeks and then returned home. She has undergone several catheterizations and biopsies and is doing so well!

Our miracle has brought so many people together (even strangers) and Katrina has impacted more lives than most will ever do over their lifetime. For being such a challenge, more positives have resulted from our experience.

We celebrate every beat of her heart!

— Kati and Jon, Katrina's parents and Arianna, big sister (Washington DC)


This article was last updated on November 30, 2003

  • Born:  March 10, 2003
  • Diagnosis:  Total anomalous pulmonary venous connection (TAPVC), Double-Outlet Right Ventricle (DORV), mitral valve regurgitation, pulmonary stenosis, hypoplastic left ventricle, heterotaxy syndrome
  • Treatment:  Heart Transplant


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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