A few years ago, I shared the story of my own heart scare (scare is really too dramatic a word, but…). I have something called SVT. It’s essentially a condition that makes my heart race and can lead to some light-headedness and even nausea. It’s not fun but in my case, it’s controlled by some easy exercises and regular check-ups: no medication.
But because of my issue, which dates back to my teenage years, I was hyper aware that my daughter might inherit my condition or might develop one of her own.
Spoiler alert: she did.
(However: being told by the pediatric cardiologist that your hours-old baby needs an echo and an EKG and follow-up for the first year of her life will rock to your core. Life-threatening or not, all I heard was “your baby has a heart problem.”)
Audrey is healthy, happy and nearly murmur-free as of her 4-month appointment. But I’ll be monitoring her for the rest of her life.
The EKG, by the way, was not the only test that Audrey had at birth. The other one is a simple, painless, covered-by-insurance exam…that nearly nobody knows about.
I first heard about pediatric pulse oximetry when I was pregnant and reading up on possible heart conditions in babies.
I found, sobbed over, and bookmarked Cora’s Story.
A snippet from the website:
No family should ever be blindsided by the most common of all birth defects, occurring in about 1 in 100 births. I present to you, a crash course in congenital heart defects (CHD), or what I wished I’d known about CHD before giving birth.
I found out after my daughter [Cora] died that she had a congenital heart defect. When I first heard about it, I thought it must be something rare, for me, an educated woman that read everything I could while pregnant to no nothing about it. Turns out, it’s not rare at all as far as medical issues in children go. Congenital heart defects are a leading cause of death in children and infants. Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It’s a hidden disability for these adult and children patients.
Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calm and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don’t. This easy test saves lives. Ask for it.
Again, my doctors did everything right, and I’m forever thankful for it. They heard the murmur at her very first exam, and continue to listen for it each and every appointment we have, from the cardiologists to the pediatricians.
But having the PO screen helped ease my mind a million times over. It’s a tiny little clip that goes onto the baby’s toe at 24 hours after birth. It stays on for a few minutes and measures the amount of oxygen in the blood. No needles, no invasive screenings. Just a little sensor.
I had to ask my doctors for the test — I put the request into my chart when I pre-registered at the hospital (and spoke with the head nurse to make sure they could accommodate it) and again asked the pediatrician to perform it when she first visited us to look at baby. My insurance covered it, but had I not asked, it would not have been done. I know…I asked the nurses how many other moms have requested the same test, and it turns out, I was the first.
The CDC highly recommends this test become part of a standard routine after birth, and I hope more doctors start informing their patients.
Because now I go red for myself, for my baby and for everyone.