Our Story

When Laith was born, at 36 and a half weeks, he was not initially breathing and needed to be resuscitated. As a result, he was immediately admitted to the NICU where he was given help breathing and then later help with feeding and for jaundice. He was released 8 days later seemingly as healthy as could be.

The first few weeks he was home after that were great. He was a little fussy, but overall seemed to be doing well and developing fine. At about 7 weeks old we noticed a marked decrease in his food consumption, so we started tracking how much he was eating. It was less than he was eating the week was born and far less that what he should be eating for his weight, so we made an appointment to see the doctor. The doctor asked us a series of questions and said it sounded like acid reflux so they gave us some medicine (zantac) to help counter the acidity.

When we got home and gave it to him it seemed to help for the first few days but the amount he was eating didn't increase at all. We went back the following week to the clinic for follow-up and the doctor we saw that day said he looked like he was breathing too hard and fast and asked us to get an x-ray. The x-ray revealed that he had an enlarged heart and we were told that he needed to be admitted right away for further tests.

After an initial echo, the resident cardiologist told us we needed to be transferred to the Pediatric Intensive Care Unit as his heart was a lot worse than he looked and acted on the outside. After several more tests over the next few days, the cardiologists told us that he had a congenital heart defect and that the problems he had with his heart were extremely rare to occur all at once. He had a large aneurysm in his left ventricle, mitral valve stenosis/regurgitation, as well as cardiomyopathy. The doctors concluded that his heart was too weak for surgery as the whole heart was damaged and barely functioning and that his only option for survival was a heart transplant.

With that understanding, we set about trying to find a transplant facility for him since OHSU, where he currently was, is not one. The closest one was Seattle Children's Hospital so we contacted them to arrange a transfer. After two days of dealing back and forth, Seattle said that unless our insurance could guarantee coverage of the transplant (which of course they couldn't since we had already maxed out our coverage with Laith's stay at the current hospital) they could not accept him. They stated that they could not admit him unless we were able to put up  a 1.5 million dollar deposit!

After contacting a few more facilities in California (Loma Linda and Stanford (Lucille Packard)), we were essentially told the same thing. All of these facilities seemed willing to accept the consequences of him not having this much needed surgery than to be responsible for any of the cost of treating him.

Fortunately, we were able to find a hospital in Pittsburgh (Children's Hospital of Pittsburgh) that was willing to accept him without the deposit and we were able to get him the treatment he so desperately needed. If we had not been advocates for our son, calling hospital after hospital across the country, when the staff and the doctors at our hospital had given up hope, we might not have been so fortunate. 

I distinctly remember the day after our son had taken a turn for the worse, after the doctors had told us they weren't sure how long he had left, and after speaking to Seattle Children's Hospital and Lucille Packard and being told no again feeling a sense of despair and hopelessness wash over me as I sat on the floor of the bathroom and broke down in tears wondering if there was any hope. It was then my sister, who had been helping me with phone calls, called me and said that I needed to call the transplant coordinator in Pittsburgh and that they sounded willing to accept him. Thankfully they did. But it was that moment that I realized the importance of having an advocate. It is for that reason, and for all the families who are in medical situations that make them feel helpless that I am starting this blog. I hope that through sharing my experiences and having others share theirs we can help other families find the hope, the strength and the help they need.