The Choice in CHD

I follow a number of different social media pages dedicated to children with various heart defects. I offer prayers and words of encouragement when appropriate and my heart breaks when a Heart Warrior loses their battle with CHD.

Recently I came across a blog post from a heart mom who offered advice to another woman whose unborn child was diagnosed with HLHS (Hypoplastic Left Heart Syndrome); it’s the same defect my nephew Toby has. The woman was contemplating termination and sought perspective from parents of other Heart Warriors. As I read the post further I was saddened to learn she chose termination over battling CHD and while I don’t agree with her decision I can certainly understand it. The life with HLHS is full of uncertainty and heartache, doctors and hospital stays, and constant fear the other proverbial shoe will drop.

The principle question asked when receiving a diagnosis like this is “why me” or “why us” but I think that question is vanity. I believe children like Toby and his heart buddies are going to be born regardless so a better question to ask is “why not me”. While some view children born with challenges as a burden, I’ve come to see them as a privilege, a special gift. Living with and caring for those with special needs is not easy, and while I would never choose a life with CHD for anyone, I would choose Toby every time, even knowing he has a broken heart.

I was there the day Toby was born, I heard his first cry. I was there after his first open heart surgery at five days old, I saw his heart beating through the yellow bandage; the only thing covering is open chest. I was there when he was packed up and finally sent home a month after he was born. I cared for him between his surgeries, fed him, administered his medications, went with my sister to his numerous appointments. I sat with him as he went through morphine withdrawals after his second open heart surgery. I did my best to comfort him as nurses poked him for IV access, suctioned his nose, and pulled out his chest tubes.

I also watched as he learned to scoot across the floor on his bum. I was there as he took his first steps. I get to see his eyes light up when he gets a new Lego set. I get to hear his giggles when he’s tossed around in the air by his uncle. I get to see the joy in him when he dumps a tub of Hot Wheels and begins to arrange them in a line. My heart swells when I hear him say words and use them correctly. While every kid may do these things, watching Toby do them, knowing what he’s had to overcome, is extraordinary.

Yes there is heartache and uncertainty but there is also overwhelming joy. There is life and there is hope living with a broken heart. From the beginning I never saw a broken kid, I only saw Toby. This boy has every reason to be angry yet he smiles. He can light up a room simply by walking into it. I wouldn’t want to live in a world where Toby didn’t. I am better for knowing him and I am grateful my sister chose Toby.

End Transmission

CHD 101

February 7th -14th is a week dedicated to rising awareness for Congenital Heart Defects. Congenital means present at birth and heart defects are the most common type of birth defect. CHD affects about 1 in every 100 children and many of these kids don’t even know they have one. I didn’t know much about heart defects until my nephew was diagnosed with the single worst kind.

A routine ultrasound revealed an anomaly and a fetal echocardiogram showed my unborn nephew had Hypoplastic Left Heart Syndrome. The left side of his heart stopped developing about 30 days after conception. The cause is unknown and the cure doesn’t yet exist. The treatment consists of 3 palliative open heart surgeries with no guarantee of success.

At least in the case of Toby, it was caught with plenty of time to prepare (as much as anyone can prepare for this kind of diagnosis). I’ve heard stories of babies dying unexpectedly in their mother’s arms only days after being born; stories of infants rushed to hospitals, mothers insisting something is wrong and doctors dismissing them only to find out, sometimes too late, there is something seriously wrong. You’ve no doubt heard of high school students dropping on a football field or soccer pitch in sudden cardiac arrest, often the result of an undiagnosed heart defect. With odds like 1 in 100, chances are you or someone you know has a heart defect.

For as much trouble and as prevalent as they are, CHD doesn’t get the kind of funding for research other medical issues like cancer receive. Nearly twice as many children die from heart defects as cancer yet cancer receives five times more funding for research. In fact, CHD is the leading cause of infant deaths in the United States. About 25% of children born with a CHD will need some kind of surgery or intervention to survive. With the uncertainty of programs like CHIP, defunding of Medicare and Medicaid, treatment for these children only becomes more difficult. Imagine hearing there’s something devastatingly wrong with your unborn child and also hearing it will cost hundreds of thousands of dollars to ultimately save them. I certainly don’t have that kind of money lying around but I’m also not about to put a price tag on a life that’s just begun.

Toby isn’t the only one in my family with a heart defect. His older brother also has a CHD. Though Jackson’s is far less severe and at present only requires monitoring, the uncertainty remains. There may come a day when he will require intervention to ensure his survival.

People give money, time, and resources to causes they know and care about. As an auntie to two little boys with broken hearts, CHD is something I care very much about and only through raising awareness can we hope to eventually find a cure for kids like Jackson and Toby.

End Transmission