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Hi, I just found this website and wanted to share my story. At 6 weeks of age, we were concerned about slow weight gain with our daughter. She would refuse to eat, and if she wasn't sleeping she was screaming. Our pediatrician seemed to think this was normal but being a CVICU RN I felt something bigger was going on. We found out after bringing her to the ER she had an ASD and AP window. It is typically diagnosed in utero however, ultrasounds aren't always perfect and due to the rarity of this defect, I personally don't think the perinatologist had the clinical skill to pick up on the defect. Anyway, I couldn't find any information about AP window repair, experiences, survival rates etc. If you are a parent to a newly diagnosed CHD baby, have faith and stay strong! Our little warrior just turned 4 months and is doing great, her ejection fraction is normal now, she is off her ace inhibitor and diuretic and is growing like crazy! Babies are so tough and resilient. Never lose hope.
AHAModerator, January 15, 2021 8:57am EST
Thank you for sharing your daughter's story. I can imagine how difficult this journey must be for you and your family, but I am so glad to hear that your "little warrior" is doing great. You are right, it's crucial to never lose hope and always remember that you are never alone in these journeys.
The AHA Team