Go Red for Babies

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.

Untitled

Spoiler alert: she did.

Again, we are incredibly lucky and blessed because her heart murmur, diagnosed just moments after her birth, is one that is quite common in babies, highly treatable and not life-threatening.

Newborn Photo Shoot 12 Days Old

(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.

Maternity Self-Shoot-45.jpg

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.

Get Updates By Email!

Don't miss a single post -- subscribe for free posts delivered right to your inbox.

Comments

  1. says

    Wow. That is wonderful information to be made aware of. I have a 16 month old and this is news to me. I’m glad your (very cute) baby is happy and healthy. I wish nothing but the best for you both.

  2. says

    very good information to be made aware of, thanks.

    i was a baby with a heart murmur, which was detectable through my early years. once i hit my teen years and now into adulthood, doctors can no longer hear it, so it all worked out, but i know it freaked my mom out for years. glad audrey’s already seems to be on its way out!

  3. says

    My mom just told me that Indiana is one of the only states with hospitals that require babies be tested for heart defects after birth — I’m not sure if the PO screen is included in that, though. I’m so suprised that it’s not a common thing. I will definitely be remembering this in the future. Thank you for sharing this, and I’m glad that Audrey is healthy!

  4. says

    Thanks so much for sharing this Katy. My third child had an extensive heart echo done while in utero because of his older sister’s congenital heart defect. What amazes me is how much more can be done for CHD’s now, as opposed to just 20 years ago. When my daughter was initially diagnosed we were told that a child with her condition would have had a very poor prognosis if she had been born as few as 10 years earlier.
    So happy for you that Audrey is healthy and growing so well!

  5. says

    I know the fear. I have a heart murmur. Two of my six children have heart murmurs. My one son had his discovered at about 1 year. Baby cardiology appointments are not fun. The other son had his discovered during a sports physical in high school. He had to have several tests to show he was cleared to play contact sports as the murmur was not indicated prior to the school doctor finding it.

    • says

      The pulse oximetry has to be done 24 hours after birth, so that test is probably no longer applicable. Have doctors heard any issues with baby’s heart, either at her first check in the hospital or at any of her pediatrician/well visits?

      If they have not picked up on anything, chances are she’s OK. But it’s something to ask about at each appointment and maybe something to put on the list for any future babies.

      HOWEVER, a pediatrician friend says that the pulse ox is supposed to be standard practice for all babies born there, so you may have actually had it and they just didn’t bring it up. May be worth asking (it will be on her charts).

Trackbacks

Leave a Reply

Your email address will not be published. Required fields are marked *

Current ye@r *