CHD Awareness Week

The chances of having a child born with Heterotaxy Syndrome is 1 in 250,000. Those odds kind of sound like your chances of winning the lottery, don't they? The chance of having a child born with a CHD (congenital heart defect) is 1 in 100. Those odds do not seem fun. In fact, they seem far to common. The truth is CHD is the number one birth defect yet most people have never heard of it. I know I have never heard of it before I got pregnant with Molly. Now that I am aware of it and know most of the defects, it's a pretty scary life to live. There are so many different types. Molly's heart defects are below:

ASD
VSD
CAVCInterrupted IVC
Dextrocardia

While some of her defects have been repaired, others will never be repaired. We try not to live in constant fear but it's always in the back of our head if she is acting a little off or if she pees a little less one day or if she doesn't gain weight. We monitor her so closely ever day. We check her oxygen levels and heart rate once a week. We are constantly checking her fingers, toes and lips to make sure they are pink. She is tiny in stature with tiny feet to match. She has been placed on bypass twice. She has a pacemaker. But she is not alone. The CHD community is huge. We, as heart parents, connect on a level that no one will understand. We love one anothers kids because we understand what they have been through. We share in their highs and cry with their lows. We have seen way too many kids lose their battle with CHD and it just doesn't seem fair. We don't know why it happens but what we do know is that it makes us stronger people and parents for knowing about it and living through it. We are not better than anyone that has a heart healthy child. We just look at life and our children in a different light. We are trained to look at them differently. We connect without even meeting each other. It's all we know now. Their child's name because topic of conversation in our house when they are struggling. We check Facebook 100 times a day for an update when they are in surgery. It's an unexplainable connection. While I wish Molly never had to worry about her heart, I'm happy to know these other parents and have someone that understand what we feel.

We don't know what Molly's heart will need for repairs in the future but we protect it with all we have. She will most likely need her mitral valve repaired or replaced at some point but we try to focus on today and encourage her to live a full, happy and most importantly, a healthy life. This week we are keeping the CHD angels in our thoughts and in our hearts. We celebrate this week for them and for all of the other kids that have fought so hard just so they can have a little bit of normalcy. They want to be like everyone else and deserve a fair shot at life. I wish we could some thing to give them what they deserve. But for now, we can spread awareness...for the angels, the warriors and for Molly!

Because Molly is 1 in 100!