LOUISVILLE, Ky. —
Seemingly healthy kids can go from being perfectly healthy one second, to going into cardiac arrest the next if certain medical questions are never asked.
That’s why the American Academy of Pediatrics released new medical guidelines that could save a child’s life from SADS – known as sudden arrhythmic death syndrome.
And Alexis Loveless, a 14-year-old in Louisville, faced the reality of overcoming a condition of SADS.
“She was diagnosed with a condition called long QT syndrome, which is a cardiac channelopathy, and that condition puts her at risk for sudden cardiac death,” Meredith Loveless, Alexis’ mother, said.
Long QT syndrome is just one of several conditions that fall under SADS. The Loveless family only found out about the syndrome after Alexis suddenly fainted in February at a pep rally.
Sudden fainting is one sign of SADS.
“The type she has puts her at risk, not so much for exercise, but for startles, loud noises, and sleep,” Meredith said. “So things that you can’t necessarily control. So it leaves you feeling, how am I going to protect my kid?”
And the Lovelesses are not alone.
Dr. Michael Ackerman, the SADS foundation president, said SADS kills around 5,000 young people age 1 to 30 every year in the U.S. But with the right screening questions, around 50% of cases are preventable.
“It’s long overdue,” Ackerman said. “It will do a great job once implemented, to catch that half that give warning signs before their tragedy.”
That’s why the American Academy of Pediatrics released new guidelines with just four questions for pediatricians to ask. The questions read in part:
Has any relative died of an unexpected or sudden death, such as drowning or unexplained car accident?
Have you experienced exercise-related chest pain?
Have you ever fainted or passed out without warning?
Are you related to anyone with HCM or hypertonic obstructive cardiomyopathy, or other syndromes / SADS conditions?
“We’ve been advocating this for 20 years,” Ackerman said. “The SADS foundation, as an organization, have put out these warning signs about 15 years ago.”
But for guidelines to actually be implemented is a whole other process local hospitals now face.
“So ideally, it would just go into effect with a click of a button and everybody would see it pop up in their electronic medical record, they use it, these are questions we should ask this patient of this age,” Dr. Laura Bishop said, an internal medicine and pediatric trained hospitalist with UofL and Norton Children’s. “In practice, it’s a lot more difficult for things to filter down.”
Bishop says it could take months to become common practice. New guidelines first have to filter down to doctors so they can learn about the updates. Then practitioners must make the decision whether to implement the guidelines or not.
And Meredith hopes the changes trickle down fast to save other kids’ lives.
“I feel so grateful, that we are able to find out what we were up against,” she said. “And be able to get the right treatment. And know that she (Alexis) has a normal future.”
As of two weeks ago, Alexis now lives with a pacer maker and implantable cardiac defibrillator. As a competitive dancer, she gained a lot of gratitude for her ability to dance and perform athletically. Since February, she hasn’t been able to compete or dance at all.
“Dance, I kind of took it for granted,” she said. “I could almost be taken away from it. That was just hard. And then, just like with the connections I have after everything that’s happened, the support I’ve received that’s just been truly amazing to see.”
Alexis used to have to carry her AED around in her dance bag. But after the surgeries, that bag is a little lighter now. But Alexis said will carry this lesson with her every time she takes stage.
Alexis can expect to start dancing again in about five weeks’ time. She started her post-op follow-ups and treatments on Wednesday with Norton Healthcar