Adam M.
Pennsylvania
Birth Date - May 26, 2012
Main Diagnosis - Pulmonary Atresia, VSD, MAPCAS, Pulmonary hypertension
THEME: MUSIC - specifically animal figures with musical instruments
Quilt Deadline:5/1/2014
Adams's Story
Adam was born May 26 2012. He was a healthy, kicking, and screaming baby boy. A few hours after birth he turned blue and an echo showed he had Pulmonary Atresia, VSD, MAPCAS (a rare defect that affects bloodflow to the lungs). He was rushed to the local Children's hospital where he under went a cardiac cath and his first open heart surgery. At 6 months he went in for another cath, and it showed that he needed yet another open heart surgery to place a piece in his heart and repair a few of the defects. He recovered well. 8 months later a routine heart cath turned into a 4 week hospital stay with a 3rd open heart surgery to place a new piece. He was also diagnosed with a new problem, an incurable lung disease called pulmonary hypertension. His right ventricle was not functioning well due to the increased pressure, so he was sent home on oxygen after a very rough recovery. The months following Adam (14months) was finally beginning to act and live life like a toddler.
Just 4 short months later yet another routine heart cath landed us in the hospital Our bouncing full of live toddler went into the cath strong and happy and came out intubated and fighting for his life. He went downhill fast and we decided that our hospital was no longer a safe place for him. He was life flighted to Children's Hospital of Philadelphia where he underwent yet another heart cath. It was determined that what was done in the cath at our other hospital was what was killing him. The Dr.s at CHOP fixed the mistakes and with in days our baby boy came back to life. Less than 2 weeks later we would be headed home with a better than ever Adam.
He will have many more open heart surgeries, and his battle with pulmonary hypertension will last a lifetime. There is a possibility that he will end up on the double lung/heart transplant list at some point later in life.
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