Read this article if you have a moment. Congenital heart defects are underfunded and often misunderstood. I dont think the complexity and severity of Jacks condition even really hit me until Jack was a few months old. I often am asked, Jacks okay now, right!? Kyle and I chose to be very optimistic about Jack, so I think that leads many people to misunderstand his diagnosis... The three stage surgeries for HLHS are not a cure. His heart functions completely differently than ours, meaning his anatomy is different/not normal... meaning he has a much higher potential to develop other life threatening chronic illnesses, such as neurological issues, liver issues, plastic bronchitis (similar to cystic fibrosis), lymphatic issues, etc. In addition, because the heart is doing so much extra work, the heart wont last an average lifetime. Most doctors say to expect a transplant at some point... transplants bring with them so many other issues, so hopefully a much better fix (or even cure!) will come soon. Kids with HLHS have a 70-75% chance of survival to 5 years old. The third surgery has a 95% survival rate. Survival rates past 5 years old arent really known. The oldest survivors are in their early 30s (and I actually only know of one person that age...). So much of this is unchartered territory, so we have no idea what to expect. Each case of HLHS is also so different. Quality of life varies among kids too. OBs used to (and may often still do) advise termination if HLHS is diagnosed in utero, saying even if the baby survives, quality of life would be so bad. When Jack was first diagnosed, his cardiologist told us besides his heart, hell be a completely normal kid. He said he cant run a marathon, scuba dive, sky dive-all things Kyle and/or I love. He said he wont be an Olympian... But Shaun White, Olympic snowboarder, was born with a severe heart defect as well, and his parents were told hed never be an Olympian. Some HLHS kids are 4 years old and still not walking, while others are running around in Tee ball. As I said, we chose to be positive and to not hold Jack back from anything. The only thing that has changed due to his diagnosis is that we cant go overseas like we wanted at this point. Jacks defect is one of the most severe types, but there are so many other types out there, and anyones baby can be born with one. I did everything right during pregnancy and we have no history of heart disease in either of our families... but Jack was the 1 in 5,000 for HLHS (1 in 100 for a congenital heart defect). Twice as many kids die each year from heart defects than all forms of childhood cancer combined, yet funding for childhood cancer is five times higher than that for CHD. If youre ever in the donate-y mood, you can donate to the Childrens Heart Foundation to help with research costs. HLHS is one of the most studied heart defects, and were hoping to beat the clock. scribblesandcrumbs/2015/01/12/10-things-you-need-to-know-about-congenital-heart-disease/
Posted on: Mon, 12 Jan 2015 17:31:32 +0000
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