Tag Archives: CHD

Talking Jimmy Kimmel, Heart Kids and Saving the ACA on CNN’s Don Lemon

I had a quick appearance on CNN with Don Lemon last night (watch it here). Pretty much everyone has been talking about Jimmy Kimmel’s beautiful monologue about his son Billy, who was born a few weeks ago with complex congenital heart defects. It’s thoughtful and eloquent (and still funny!), all the more so because he delivered it so soon after Billy’s first open heart surgery. Their family is just beginning to process this diagnosis and the traumatic journey they’re now on. But he recognized the importance of using his platform to raise awareness about protecting the Affordable Care Act, as the Republicans try once again to take it down.

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It Cost $2.5 Million to Keep My Child Alive (Slate.com)

I’ve got a new piece up on Slate on how repealing the Affordable Care Act could impact families like mine (yes, even with employer-sponsored insurance). And it will do even more damage to poor families relying on Medicaid to pay for their children’s complex healthcare needs. A little background there: As part of their ACA repeal goals, Republicans want to convert Medicaid and Medicare entitlement funds into block grants, which means that the amount of money a state receives will no longer depend on how many of its citizens need coverage. When that happened to welfare, we saw states tighten up eligibility requirements so much that 74 percent of American families with children living in poverty are now no longer able to get cash assistance when they need it.

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The story of Violet’s heart. #CHDAwarenessWeek

The story of Violet's heart. #CHDAwarenessWeek

I’ve written about writing this piece before, so I won’t go into all that back story again. But I wanted to share the essay once again, since it’s the last day of Congenital Heart Disease Awareness Week. Already, since I first published this piece last August, several more states have passed laws requiring the pulse oximetry screening — which is truly terrific news. But it’s still not required in all 50 states. And even states that have the law on the books may be slow to enforce it — as was the case for us. So if you’re a new or expecting parent, it’s worth asking (and then double-checking) to be sure this life-saving test is performed.

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The $15 Test That Could Save Your Baby [YAHOO Parenting]

After my article about Violet was published in Parade this summer, I received so many amazing letters from parents of CCHD children and from several adult CCHD survivors. I read and saved every email (yes, even if I didn’t have time to respond to you personally) because it meant so much to have these total strangers reaching out to say “I’ve been where you are.”

Then I got an email from Annie Kersch, who was writing to say “I’m there, right now.” And also: “How can we make sure this stops happening?” Because her daughter Ari also did not receive a pulse ox test at birth — which meant she became dangerously and horrifically ill before her heart defect was discovered. Annie is committed to raising awareness about the importance of pulse oximetry screening (as well as improving prenatal detection of congenital heart defects), so I knew I had to tell her story. I’m so pleased that this piece is now live on the new (and very cool!) Yahoo Parenting.

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Saving The Smallest Hearts [Parade, August 2014]

I wrote the first draft of this essay quite soon after we came home from Violet’s first (22 day) hospital admission. Our life had just exploded, everything was raw, and I was filled with questions. My (excellent, patient, compassionate) midwife and Violet’s (excellent, patient, compassionate) team of doctors were endlessly kind about my questions. But they didn’t have all the answers. And during a time like that, people are quick to tell you when there’s no fruit there — you need to focus on moving forward, on being strong for what is and what’s next. They are right and I have tried hard to do that. But trying to understand why your baby’s heart didn’t develop correctly isn’t like trying to understand why your ex-boyfriend stopped calling. It’s a big, never-ending question with a million answers (depending on your faith or lack thereof) and also no answers — at least not scientific ones, at least not yet.

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