There’s a part of CHARGE that we, as a community, don’t really like to think about. Unfortunately, we’re forced to look it square in the face a little too frequently. See, CHARGE syndrome has a fairly high mortality rate before age five.
That’s around 1 in 5 or 6. Can you imagine that? Watching 1 in every 5 or 6 children that are like your child dying before they reach age five? It’s horrible and it affects us more than we’d like to admit.
Because we’re not just occasionally losing a child to their health issues associated with CHARGE. We are frequently losing them. And we’re not even seeing all of them. Some of the children die before they get a diagnosis or before their family reaches out to the online CHARGE community, but we still lose at least one a month in our online community. At times it’s been one a week.
Every year, statistically speaking, there are around 400 babies born in the U.S. with CHARGE. Of those, we will probably lose about 60-80 before they reach age five, with most of those deaths occurring in the first two years.
That’s a lot.
The total infant mortality rate for the entire U.S. is just 0.6%. And we’re dealing with 15-20% in our community!
Why do we have such a high mortality rate? Well, sometimes, the birth defects are just too severe. CHARGE can affect nearly every system in the body and the interaction between those systems is sometimes very unpredictable. And when you combine airway issues with heart defects, sometimes it’s just too much for their little bodies. And sometimes, unfortunately, it’s because the doctors weren’t well educated in CHARGE and didn’t handle the various health issues appropriately. Other times, sickness that is so simple for everyone else, is just too difficult for their complicated systems to fight off and things go downhill for them quickly. And then there’s the scariest one for the community: when an issue was undiagnosed. When something life threatening was overlooked because symptoms were attributed to other diagnosed issues. We parents are haunted by this possibility.
I’ve said it before and I’ll say it again, there is a never a time that I get to be just overwhelmed with love for Evie. It is always always always paired with a deep pit in my stomach and ache in my heart as I beg God to let me keep her.
It’s heartbreaking whenever a child dies, but what if that child’s death is a clear and blatant reminder that it could just as easily be your child. And not in a freak accident or random illness kind of way, but in a “that child died from issues that my child has” kind of way. It is a direct or near direct comparison many times.
We, as a community, struggle with every. single.death. We hurt for their families. We worry for our own child. We see similarities in our children’s appearance and medical issues and ache even harder for the parents that have to say goodbye. But then we grit our teeth and focus on our own CHARGEr. What else can we do? I find myself almost jealous of the communities who can fully grieve a loss, instead of hardening themselves to so much death.
What’s crazy is that I think the CHARGE community is pretty happy that we’ve gotten the death rate as low as it is now! It used to be much much higher, but through education and advancements in medical technology, more CHARGErs are living longer and fuller lives.
But here’s what you need to remember: We may look paranoid, keeping our child away from any and all sickness, being terrified of even “routine” surgeries, but you’re not seeing what we’re seeing. You’re not supporting “family” members as they say goodbye to their children. You’re not secretly hoping they share how their child died so hopefully you can breathe a sigh of relief that it’s nothing you need to be concerned about.
If you knew that your child had a 15-20% chance of not making it past age five, I guarantee, you’d be just as “paranoid” as we are.
This was a hard post to write. Frankly, I don’t like thinking about it if I can avoid it, but it’s important for everyone to understand what the situation is. We desperately hope that Evie will be just fine and live a long and healthy life, but we’re not so foolish as to think we’re somehow immune to the loss that other families have experienced. We’re not being paranoid. We’re, unfortunately, being very very realistic.
Evie is not at death’s door. She is thriving, actually, but she is still an immensely complex little girl. We continue to pray that we haven’t missed anything, that all of her health issues are diagnosed and appropriately managed, that she handles all future surgeries as well as she’s handled the previous dozen or so, and that sickness doesn’t take her from us. And we’d appreciate those same prayers from all of those who care about her.
We’ll continue to work on education for doctors and research about CHARGE and if you’d like to help with that, please consider giving a donation to the CHARGE Syndrome Foundation (just click on the gold Donate button on the left side of the screen). Since CHARGE is so rare and still relatively newly recognized (first identified in 1981 and gene discovered in 2004) there is so much research that needs to be done (like WHAT health issues need to be looked for!). Hopefully in the next several years we’ll see the mortality rate drop even further, but in the meantime, we’ll continue to support those families who have had to say goodbye to their precious little (and not so little) ones.