Justin

Justin was born in May of 2007 with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Basically the whole left side of his heart was under-developed and not functioning. He was flown to Miami Children’s Hospital and underwent his first heart surgery called the Norwood at just four days old. At five months he required another surgery called the Glenn.

At the age of 3 Justin underwent his third surgery called the Fontan. The last surgery was rough on his heart and according to Justin’s mom Amanda doctors took a “watch and see approach”.

Justin was able to start school but began getting sick a lot, requiring tubes in his ears and having his adenoids removed. Complicating matters, Justin was diagnosed with ADHD High Functioning and Autism.

A few later Amanda says Justin started complaining of his “heart feeling like it was coming out of my chest”. After several catherizations, Justin had atrial flutter 1st degree AV heart block and was started on medication to control that. He was placed on a heart monitor and followed closely. A few years later, his team sent Justin for another opinion at Joe DiMaggio Hospital which showed the right side of his heart was failing moderate to severe tricuspid valve leakage and the Fontan circulation was high and failing. Justin was listed for a heart transplant and had a PICC line then a broviac line in place to give him a special heart medication called milirone.

On December 18, at Justin’s monthly clinic appointment, Amanda says “things went down hill. Justin’s line pulled out of his skin and he spiked a fever so they couldn’t replace it. He had an infection in his line. The team decided it was best he remain in the hospital until a new heart was available.” 

Justin has been on the transplant list for over 500 days and while trying to stay positive, he says that he really misses his brothers and being at home. He is trying to stay healthy so his body will be healthy when the call comes that a heart is available..