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.

But while I couldn’t answer why this happened, I realized that I could answer — at least partially — why we had no idea it was happening until it was almost too late. Violet missed out on a critical newborn health test known as the pulse oximetry screening. It’s safe, noninvasive, painless, and cheap. There’s honestly no good reason why every newborn doesn’t get it. Congenital heart defects like Violet’s account for 24 percent of infant deaths due to defects — because without this screening, these babies look perfectly healthy in the first few days or weeks of life.

I wrote this essay for Parade, so I could answer that one big question. And also I could stop accosting every pregnant woman I meet and telling her about this test. (Friends of mine who have indulged that particular soap box; thank you — and I am so grateful for your healthy babies!)

If you are expecting a baby (or know someone who is), you can check whether your state mandates the pulse ox test here. But remember that enforcement of those mandates varies wildly; even if the test is required where you live, it’s worth talking to your hospital to ensure they have a good protocol for administering the test, and checking it off your to list before discharge.

At press time, the American College of Cardiology told us that Mississippi, Washington, Rhode Island, Washington DC, Colorado, Florida, Hawaii, Idaho, Kansas, Vermont, and Wyoming had yet to require the test. If you live in one of those states, please tell your legislators how important it is that they do so.

If you missed last weekend’s paper, you can download a PDF of the story or read it online here. Thank you for reading, sharing, and raising awareness.

 

PS. I didn’t have space to thank them in the article, so I would like to highlight Violet’s excellent medical team here: The pediatric cardiology, pediatric cardiac surgery, pediatric general surgery, and pediatric intensive care units at Maria Fareri Children’s Hospital in Valhalla, New York has now saved her life at least three times. And they wouldn’t have had the chance if it wasn’t for our amazing pediatrician’s quick action. There are not enough people in the world who can do what these people do, let alone do it with as much grace and kindness.  

PPS. Gorgeous photo of Violet by the talented Sarina Cass of Red Anchor Photo. 

 

 

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