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Paper Hearts: Childhood Heart Disease Awareness

childhood heart disease

I wanted a baby. I envisioned a perfect world where I had a healthy pregnancy, found out the gender, delivered, and lived happily ever after. I never ever envisioned childhood heart disease in my plans.

When I was 19 years old my OB told me that there was a very high chance I was carrying a child with down syndrome and that they found something wrong in her heart. Because they felt that the down syndrome was the primary concern, they pushed for a amniocentesis test when I was far enough along that if it caused a preterm delivery the baby had a chance to survive. I sat with this news for months. The base I was stationed at was small, and the did not have a full medical staff. I was scheduled to be medivaced down to Ft. Lewis for access to more doctors, but instead they flew some to Alaska. Maybe it was amateur hour, maybe it was just 15 years ago, I don’t know. But it was scary as hell.

They told me the numbing agent hurt worse than the amnio and that it would be best to do without it. And then funny enough, they couldn’t get a sample the first round, so they had to do another, at this point they told me, now it would have paid off to get the numbing medicine, but if we do it now, it will still hurt more than one more stick. Mind you, this is a rather huge needle that is going pretty far inside me. It was awful. All of it was awful. And I cried. I cried for the baby. I cried for me. And I cried because I was scared. 19 years old, that’s just 4.5 years from where my child is at right now.

Results came back negative for down syndrome, so the doctors did one more ultrasound and decided that it was just calcium deposits on her heart and that they would take a closer look later. A few weeks later I gave birth to a beautiful baby girl and all was well and in the past, until a checkup showed a heart murmur that ended up being a mild case of VSD, a hole in her heart. As far as childhood heart disease goes, this is fairly common, and most often minor. Her case wasn’t super serious, but along the way we got to meet some friends that weren’t as lucky. Babies that required extensive surgeries. Babies with extensive scars down their tiny little chests. And it was exposure to something we had never seen before.

I haven’t thought a lot about it until recently. When a sweet friend asked me to share along in a project to spread awareness to childhood heart disease I was very happy to. I was very lucky, of all the children to have had this particular medical issue, Aubrey was so easy, so calm, and so willing to go along with it. But this required lots of doctor appointments, lots of tests including echocardiograms that require the baby to lay still for periods of time. Shortly after Aubrey turned a year old they decided that it had closed on its own, sometime that is common for that particular heart defect. But this is a huge reality for so many others out there. Statistics show it affects 1 in 110. I had one, and we were extremely lucky, and it was only a year of our lives, and no surgeries were required, no at home interventions, no oxygen tanks, it was only a mild inconvenience.

There is a Paper Heart Project to spread awareness for Childhood Heart Disease. The more awareness that is raised, the more opportunities for funds to be raised for research. This isn’t something caused by smoking, or eating non organic foods, this isn’t something that affections one racial group, or only poor parts of the world, this is everywhere, this could be anyone.  Help this cause by taking a photo of your child or loved one, your pet, yourself, take a photo of anyone with a paper heart. If you or the person is a heart hero, add a zipper. Anyone can make a difference.

And if down the road, you or someone else finds themselves in a position to receive this news, you will know that you’re in an amazing community that all stands with their support.

childhood heart disease

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