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Frank, born 2017

My baby's congenital birth defect was NOT detected in my ultrasounds. According to my OB/GYN, Cardiomyopathy is one of the few defects that will not appear in imagery ultrasounds because it only detects structural abnormalities, not muscle abnormalities. Anyway during my 36 week checkup, the nurses checked the heart beat and it was 190 bpm. Immediately I was transported to CS Mott Children's Hospital and had an emergency c-section on October 5, 2017.

 

My baby was born with Dilated Cardiomyopathy. He had excess fluids in his body and in my belly. He is still hospitalized right now. His Ejection Fraction is 5%. The doctors said they didn't think he would survive a few days. But it’s been 8.5 weeks and he is still fighting strong. Although he needs a transplant, the cardiologists said he's not eligible for a heart transplant right now because he's too small and needs to be at least 8 lbs. He has trouble gaining weight and absorbing breastmilk. So he's trying a specialized formula called Alfamino which is working better. We continue to hope and pray.

 

Story by Frank’s mom, Jenny - Michigan