Jerry, born 2008Little Jerry was INCORRECTLY diagnosed with dilated cardiomyopathy at 4 weeks old. He had a heart cath at 5 weeks to rule out ALCAPA. He almost did not make it through this procedure and in the end, the doctor missed the fact that ALCAPA did indeed show up on his cath images. I hope this has never happened before and hopefully never again.
At least we were treated for cardiomyopathy. At age 13 months, we went to a specialized hospital to meet the heart transplant team. During an echo, ALCAPA was seen. Jerry was in very poor condition (although you would have never known) and needed immediate surgery to repair his ALCAPA. Doctors were not sure if they should try the repair or do a transplant because Jerry had so much scar tissue around his heart. The repair was successful and Jerry's condition has gradually improved although it is uncertain from time to time.
Questions remain about how the scar tissue around his heart is and will impact him and if there is a risk that diastolic dysfunction will be an issue for him as he grows. He will have a heart cath procedure in the next few years to give us more information. It is likely that Jerry will not be able to play competitive sports but we are fortunate that we have him and he brings great joy to our family every day! We are blessed and hope that every child presenting with ALCAPA symptom are repaired quickly in order to eliminate lasting effects.
We also want to say a big Thank You to the Children’s Cardiomyopathy Foundation for all of the support they have given us! Even though Jerry's ALCAPA does not fit with CCF we have continued with the organization because of the connections that were made and because of the similarity to some aspects of his current condition.
Story by Jerry’s mom, Sue – Ohio
Tiernyn - 2005
Hannah, born 2012