CHD Awareness

It's February! And among other things, that means Heart Month is here. And today, February 7, starts CHD Awareness Week. I have spoken about this week for at least 5 years now, but there are still large numbers of people who don't know anything about it. So this year, in addition to posting on social media, I wanted to blog a bit. My plan is to post something every day throughout this week and hopefully share some information you may not have known.

What is CHD?

CHD stands for congenital heart defects. Congenital is a fancy way of saying "had it since birth." It is the ultimate pre-existing condition. Science does not yet know exactly what causes it, but it happens in the first 6 weeks of pregnancy, because that is when the heart forms. Thus, by the time you have enough hormone in your body to get a positive pregnancy test, it's a done deal.

Also, CHD is a box that contains numerous different conditions. Although knowing another heart parent or heart child can be helpful, treatments for different conditions can be vastly different. So having fellow heart parents or heart kids that can understand your and your children's experiences is often more helpful.

What Causes CHD?

There appears to be a genetic component, as having a CHD makes your children more likely to have one, and having one child with one makes you more likely to have another child with one. But, in most cases, it appears to be some kind of glitch, and most people only ever have one CHD child. The moms didn't do anything wrong during pregnancy. They haven't caused it to happen by doing or not doing something. It just happens. Only continued funding and research will answer the how and why and bring us closer to figuring out how to stop it.

How Common Is CHD?

Every 1 in 110 children has a CHD. That means you or your child almost certainly knows someone with one. Some of them are "simple" and some are considered "complex." But any and all of them can be devastating and fatal depending on their degree, when they are detected, and any number of other factors. A "simple" VSD (ventricular septal defect) is nothing of the kind when your child goes in for surgery and then suffers a stroke. Some people with HLHS (hypoplastic left heart syndrome) live many years. Some die as infants, tweens, teens, or adults. Some die after their heart transplant fails. There is no standard progression for any of the numerous conditions that all fall under the CHD umbrella.

Can CHD Be Cured?

No. It is a lifelong condition that is managed, but never cured. Surgeries generally change the anatomy so that oxygenates blood moves generally the way it's supposed to. But they do not cure anyone. Most conditions require continued follow-up care, monitoring, and medication, if not additional open-heart surgeries and heart caths in the future. Many kids who seem fine suddenly experience problems during puberty because their body is changing, so medications may work differently, or the rapid growth might tax their heart in a way it cannot sustain. As much as we have learned over the last few decades that has vastly improved life expectancies and treatments, there is still a long way to go.

Why Should I Care?

I get it. Before my daughter was diagnosed with a CHD, I had never heard of it. But it's the #1 birth defect. And it kills more children before age 1 than all forms of childhood cancer combined. I know from experience. It took my son at 10 months. But most people have never heard of it and it's research is not funded at the levels we need. Sure, more celebrities are finally speaking out about their children with CHDs. Sports stars, actors, television personalities. It's helped raise national awareness. But there are still not nearly enough people who know about it, or realize both how common and fatal it is.

What Can I Do?

Spread the word. Just getting people to know about it is a huge hurdle. Share graphics about CHD on your social media during the whole month of February--or even all year. Light a memorial candle for those we have lost to CHD.

Support someone. Parents of children with CHD and even adults with CHD often need help. Whether it's an extra set of hands to help around the house, funds to cover the expensive care, someone to watch the healthy kids while they stay at the hospital for surgeries and other treatments.

Donate. If you have time or resources available, consider giving to one of the national organizations or local chapters in the CHD community. Mended Little Hearts, Pediatric Congenital Heart Association, Children's Heart Foundation, any hospital's pediatric cardiac unit, or any number of smaller non-profits started in honor or memory of children with CHD. No gift of time or money is too small. Every new person we reach and educate is one more person who can help with outreach, comfort, care, research, support, and further education.

Be an organ donor. There are so many infants who need heart and lung transplants, and not enough donors. Ideally, science will figure out a cure and we won't need donors anymore. Until then, we need more families to be willing to donate their children's organs to help other kids live. And many kids are growing up into adults that need transplants, so we need adults who are willing to be donors as well.

These are my two heart warriors. Tomorrow, I'll share more about my personal CHD stories.