Sadly, as a heart mom active in the congenital heart defect community, hearing about another baby lost to this horrific condition is a several times a day occurrence. Every death touches me. No matter what I’m doing I always stop to learn more about the baby.
When I get emails about babies that were undetected like Cora, I’m sad that it’s happened again, especially with all the work going on now to make pulse oximetry standard. I think if the process was just moving a bit faster, and if I’d just reached out to this group or that group, perhaps every baby would already be screened with pulse oximetry. Harlow’s mom emailed me just yesterday, and I was floored, not only by how adorable Harlow is, but by what happened to her.
Harlow was a beautiful little girl born June 4, 2010.
She was born with hypoplastic left heart syndrome. For those of you not familiar with CHD, she was basically born with half of a heart. It’s a serious CHD, and without surgery in the first few days of life, most babies die.
Harlow lived with half of a heart for five weeks.
For five weeks, no one realized she had half of a heart. Every hospital has a pulse oximeter, but it wasn’t used on Harlow so we’ll never know if it would have helped diagnose Harlow earlier. But, there’s a high probability it would have, used correctly after 24 hours of life.
Harlow was diagnosed at five weeks old and almost immediately had her first surgery. She made it through that surgery.
On January 23, 2011, Harlow passed away.
We’ll never know if the outcome would have been different with early diagnosis. HLHS is complex and sadly kills many babies each year.
However, if your born with half a heart, you deserve a whole-hearted chance. What happened to Harlow should never happen again.
I’m in total awe of her mother. Harlow’s death is so fresh, and I can tell she’s dedicated to making sure it doesn’t happen again.
No mother should find out her baby has half of a heart at five weeks of life.
If you haven’t already, please read about how you can help make sure that never happens again.
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