Much of this blog focuses on our family’s experience dealing with a Congenital Heart Disease. A congenital heart defect is a problem with the structure of the heart that is present at birth, and are the most common type of major birth defect.In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)
A recent Centers for Disease Control and Prevention (CDC) study found that congenital heart defects were the main cause of death for 27,960 individuals residing in the United States from 1999 through 2006. Nearly half of these deaths occurred during infancy (younger than 1 year of age).
Treatment for the defect can include medicines, surgery and other medical procedures and heart transplants. The treatment depends on the type and severity of the defect and a child's age, size and general health.
As you can see from the mortality rates above, treatment is getting better and today, many children born with complex heart defects grow to adulthood and lead productive lives. Out of a little over 300,000,000 people in the United States, about 1,000,000 are living daily with a Congenital Heart Defect.
Our son has had to undergo 5 surgeries so far, three of them being open heart surgeries. At 13, he became pacemaker dependent.
Why share your story?
One of the things CHD parents talk about is the difficulty in getting people to understand the disease, and to understand how serious it is, and that there is no such thing as a “cure”. Our children usually do not have oxygen tanks attached to them, or any outward sign (other then a Medic Alert bracelet) that there is anything amiss. As a consequence, many friends and even family don’t have much of a clue what we face, or how serious the disease can be.
They also don’t often understand what the family is going through – the incredible medical bills, the stress, the confusion, the fear. Hopefully, the posts will help those that wonder understand a bit better what it’s like living with CHD, and will humanize many issues that sometimes turn into controversies like health care, standard newborn screening, and research funding.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research. We need research funding, and hopefully sharing our stories can help get that in some way, or encourage some young, brilliant doctor to join in the fight.
For new parents who have been handed a diagnosis, they often look to the Internet immediately to attempt to understand what is happening to them and what their potential future may be like. While there are a lot of organizational resources available, hearing from another parent that has gone through the same situation is often immeasurably comforting. Our stories let them know that while the situation is hard, you can get through it.
So, there are a lot of reasons.
Where can I find more resources on CHD?
A google search for Congenital Heart Defect Organizations will find tons of resources, links, and information regarding pamphlets, support groups, and links to information.
For more personal stories, I recommend the following blogs/places:
- Designer Heart – a social network for families/patients dealing with CHD.
- http://learnaboutchd.blogspot.com/ – a blog about CHD by It's My Heart.
- Cora's Story – blog about an infant that passed away due to an undetected CHD. Screening, please!
- Adventures of a Funky Heart – Blog of an Adult Survivor that, unfortunately, passed away after a many year battle with CHD but who shared incredible and valuable information about being an adult living with the disease. His blogroll is also a fantastic list of survivor blogs.
Rocky’s a Heart Dad.
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