Kristine Brite McCormick writes at Cora’s Story (among other sites) about her precious daughter that died suddenly at 5 days old from an undetected heart defect. She now devotes her story to raising awareness about CHD and advocating for pulse ox, a simple, painless procedure that saves thousands of infant lives but that often isn’t performed. Once you’ve read, consider sharing this information with other friends and family.
I learned about the most common birth defect, congenital heart defects, from the coroner. She called a few days after my daughter suddenly died in my arms while I breastfeed her with a preliminary cause of death and said those fateful words.
Surely, it must be something rare, I thought to myself.
When I learned that congenital heart defects are the most common of all birth defects with an incidence rate inline with something like autism and much higher than other conditions I’d heard while pregnant of dozens of times, I felt lied to.
I felt bamboozled by every pregnant site/book/resource I read.
They (thankfully and rightfully) told me steps to take to help prevent SIDS. They told me about tests for rare genetic conditions, and they should have.
But never once did I read anything about how to protect my daughters heart.
Instead we took her home as what we thought the picture of good health. She was nearly 9 pounds, and had the most pinchable baby cheeks. She looked so perfect.
Inside her heart was a ticking time bomb that would explode and forever change the course of my life.
When Diana was pregnant with Kaden, she asked me what she should do. She listened to my pleas. My shouts, whispers and demands to the universe that we all work together. She even let me write about questions to ask about your baby’s heart at ultrasound. She made sure her baby was screened for critical heart defects with pulse oximetry after birth. In the cruelest twist of fate I can think of, Kaden developed a heart problem after birth.
It’s not our fault if our babies are born with heart defects, or acquire them after birth. It’s certainly not our fault if they die.
My message is simply that like we all do whatever the current recommendations are to prevent other serious conditions, we have to think about our baby’s hearts.
As parents, some of our doctors sadly won’t know about the newest recommendations, such as was and is on much more limited basis the case with pulse oximetry screening.
February 7-14 is Congenital Heart Defect Awareness Month. Please take a few moments to spread the word to every mama you know. Birth defects are the number 1 killer of babies. CHD affects 1 in 100 babies.
I can’t thank my friend Diana enough for once alone letting me borrow her space to talk about it.