Tag Archives: newborn screening

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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