When our son 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 initially had help breathing and then later for help feeding and for Jaundice. He was released 8 days later seemingly as healthy as could be other than still being jaundiced. The first 5 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 I started noticing a marked decrease in food consumption and started keeping track of how much he was eating - it seemed to be at least half or one third what he should be eating for his weight so I made an appointment to see the doctor. When we saw the doctor (at OHSU) they 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.
Initially when we got home and gave it to him it seemed to help for the first few days but then got worse and the amount he was eating didn't increase at all. We went back the following week to the doctor to follow-up and for the two-month regular check up. The doctor 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 be had all at once, namely a large aneurysm in his left ventricle that is the same size as his ventricle, as well as mitral valve stenosis/regurgitation. Based on their findings of cardiomyopathy, which in my understanding basically is a catchall when there isn't a set diagnosis, the doctors have stated that his heart is too weak for surgery as the whole heart is damaged and that his only option for survival is a heart transplant.
With that understanding, we set about trying to find a transplant facility for him since OHSU, where he currently is, is not one. The closest one was Seattle Children's Hospital so we contacted them to arrange a transfer. After two days of talking back and forth, Seattle's said that unless our insurance could guarantee coverage of the transplant (which of course they couldn't since at 100,000 coverage we'd probably already maxed out with our stay at OHSU) they could not accept him, unless we were willing to put up 1.5 million dollars!
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 seem 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. It breaks my heart looking at him to realize that money stands in the way of his survival.
If a child will not survive because of a lack of funds than our healthcare system is broken and needs to be fixed. Please contact your state representatives and request mandatory healthcare coverage for children. No child should have to go through this, and no parent should have to make that choice.
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