Heartwarming: Mom presses doc to look harder, heart defect found, life saved!

Moms, we've all been there. My friend Lindsey took her sick baby to the pediatrician, the doc did a once-over and declared her healthy. Great. A co-pay and shuffled morning for nothing. Don't you just want to tear your hair out when that happens? As Lindsey was turning to leave though, she stopped and asked, "Are you sure Elise doesn't have a heart murmur?"

What followed were three weeks of hell. The doc did another listen and yes, he did hear a murmur this time. Elise was referred to a pediatric cardiologist who immediately admitted her to the Pediatric Intensive Care Unit to await open heart surgery. Two days later Elise's body temperature was dropped to 60 degrees, her sternum was opened and a medical team furiously worked to correct several heart defects that will affect the rest her life if she were to be lucky enough to survive.

Elise did survive and she's doing great, but only because her mother had asked that question.

As it turns out, a heart valve that normally closes at birth was miraculously still open for Elise, an anomaly that allowed her to live as long as she did with the other complications. From Lindsey's blog,

"If her ductus had closed at any time like it was supposed to, she would have gone into heart failure [ . . . ] I very easily could have found her dead in her crib one day."

Elise had an older brother with more severe congenital heart disease (CHD) who passed away at just over a month old, so Lindsey knew the right question to ask. But still, it was mothers' intuition that trumped a medical professional and saved her daughter's life.

We moms know when something is wrong with our child. We also know when it's not, like when strangers say stupid things like, "isn't she walking yet?" and "feed that baby a damn hotdog!"

Babies are part of our bodies, even after they are born. And while the medical community is a great asset and indeed it takes a village to raise a child, there is nothing in the world like a mother listening to her gut.

Just ask baby Elise.

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  • Jenna, thanks for sharing Elise's story. I want to add for anybody out there that the fact that Elise went 3 1/2 months undiagnosed is really something to be aware of. My first child had a severe congenital heart defect called Hypoplastic Left Heart Syndrome; his heart defect killed him when he was a month old. So, for each of my other two children, I was watched like a hawk during pregnancy. I had about a million ultrasounds with Elise, as well as a fetal echocardiogram performed by a pediatric cardiologist. All of them came back clear.

    CHD is missed very frequently. Sometimes, a parent finds out their child has a heart defect when they read their child's autopsy report. That very easily could have been us. If Elise's doctor hadn't heard that murmur, the odds are I would have been burying another child.

    There is a very simple screening that can catch some heart defects called pulse oximeter testing. A pulse ox is a thin, flexible piece of fabric with a sensor in it. It looks like a band-aid with a red light. It's completely painless, non-invasive, cheap, and fast. If you're pregnant, as for a pulse ox screening 24-48 hours after birth, before you leave the hospital.

    Even if your child's pulse ox looks good, it's important to know some of the signs and symptoms of CHD. Elise always had good numbers with a pulse ox exam, but she obviously had some issues. Some of the common signs are:

    Poor weight gain (Elise was/is failure to thrive, despite being breastfed on demand)

    Tiring easily while feeding (Elise had this)

    Bluish coloring of the lips, nail beds, or the bottom of the feet

    Sweating, especially around the head, during feedings (Elise did this)

    Rapid breathing (Elise did this)

  • Oh I'm so glad you wrote this, Jenna! I seriously can't get over the whole story...so miraculous! We have mama's intuition for a reason, but sometimes I know I feel like I need to try to shut it up more often. In the end, this taught me that a doctor's bill for nothing is much better than blowing something off that could be serious.

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