Friday, October 17, 2014

1in100; Our Relationship With CHD

Kade was six months old when we finally heard his diagnosis. Although, his cardiologist didn't say, "He has Congenital Heart Disease." She told us, quite simply, that he had holes in his heart.

I knew the names of them before she spoke them because I cheated during the echo-cardiogram. I watched the tech type in the letters V S D with her gloved middle finger and later, A S D. Jabby little pokes, spelling out Kade's future. When we got back to the waiting room, I googled it. I had already read the definition, symptoms, treatment and all sorts of scary statistics.

He's one in one-hundred.

We fought hard for this and the news washed over me, a wave of relief. We finally had an answer. And it wasn't that I was " new and over-protective." It makes my insides twist to think of what would have inevitably happened to Kade if we had quit fighting.

So, there was the digoxin. There was the lasix, making him wet through his bed every night. There was panic bubbling in my chest because I could tell they weren't working. He was sweating, profusely. He was sleeping too long.

And that term kept coming up in conversation- the one I would see on every medical record he has- the one that makes me cringe and ball up my fists: Failure To Thrive. 

At nine months old, there was the surgery. We held it together until I put him in the arms of the surgeon. It was like a movie- swinging doors with little circle windows. He was crying and reaching towards us as they walked away with our baby. I lost it in the cafeteria, sobbing to my family, "It's not fair. He doesn't understand."

 Then there was the recovery. The moment I saw him, he looked better somehow. Even with all of those tubes, wires and bandages, his color was improved. His skin was finally getting oxygen. And the days that followed were remarkable. Kade improved more each day and was home within the week. The check-ups went from every month, to three, to six.

"A small residual leak," says the Doc, "But nothing to be worried about right now. His patch is intact."

So, now what?

We are the lucky ones. Congenital Heart Disease is a bully and a killer. It takes more children a year than every childhood cancer combined. It is the leading cause of death in infants. 32,000 children in the U.S. are diagnosed every year. It steals vacations, first days of school, Christmases, graduations and birthdays.

I try my best to connect with other CHD moms. I'm active in CHD groups, I follow a lot of stories, I offer up my support the best I can. I'm told a lot that Kade is a beacon of hope for them and that makes me very proud of my warrior. At the same time though, I weep for these moms. Kade will likely lead a very normal life. Considering the severity of heart defects, Kade's was one they have success in mending. He probably won't ever be able to play sports but he will live. Others aren't so lucky and multiple defects leave them in a scary place, literally clinging for life.

Can I really relate to them? It's hard to find where we stand in the CHD community. Because so far, we're done with surgeries. We're off the medication.

Even though we're likely done, I worry. When Kade is on the playground and is hit in the chest with a ball, I gulp up air and go into a tizzy. I worry constantly about his chest wires snapping or that his ASD's aren't closing. Some of my worry is warranted, a lot of it is unnecessary. I guess this is where we relate with the CHD community- even after the recovery, there is the worry. I think every Heart Parent knows that worry.

But through the worry, there is the hope. Heart defects are becoming more treatable. Our kids are fighters- unbelievably resilient and so incredibly brave. We have each other- a tight knit group that can lean on each other for support, shoulders for crying, coffee runs and late night texts. And, we have you; our family, friends, acquaintances. With your help, we can keep fighting back against CHD.

If you would like to know more about spreading CHD awareness, please click:

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