Pittsburgh family says newborn screening saved baby's life

A growing number of parents across the U.S. are declining routine preventive care for their newborns, and doctors say the trend is raising concerns.

A recent study published in the Journal of the American Medical Association found that refusals of the vitamin K shot nearly doubled between 2017 and 2024, rising from 2.9% to 5.2%.

The same research found that parents who refuse the vitamin K shot are also more likely to decline other types of newborn care.

In Pennsylvania, the full scope of the issue is unclear. State health officials do not track how often parents decline the vitamin K shot or other newborn interventions.

State data suggests this hesitancy may continue into childhood. In Pennsylvania, the percentage of kindergarteners fully vaccinated against hepatitis B, which is required for school, dropped from 96.9% in 2020 to 95.1% in the 2024 school year.

Healthcare providers say they're increasingly navigating an "information battle," as parents turn to social media and personal research to guide decisions.

For one Pittsburgh-area family, choosing to accept a newborn screening made all the difference.

Just days after bringing their son Leo home, Megan Popps and Devaughn Debelak noticed something wasn't right.

At first, it was subtle, and his breathing seemed off.

Then came a call from the hospital: Leo's newborn screening results were inconclusive for a rare condition called Maple Syrup Urine Disease.

His parents rushed him to UPMC Children's Hospital of Pittsburgh.

Maple Syrup Urine Disease is a metabolic disorder that prevents the body from properly breaking down certain amino acids, causing toxins to build up rapidly. Leo's levels were dangerously high.

"A safe range is between 100 and 200. They like to see it below 200, and his was 3,000," said Popps.

Doctors say early detection gave Leo a critical chance to survive.

"The window for a classic Maple Syrup, which is what Leo has, is about two weeks for it to be treated before it is fatal," said Popps.

Dr. William McCarran, director of the Allegheny Health Network Newborn Medicine Program at West Penn Hospital, says cases like this highlight what's at stake.

"We've seen it across the whole system, and we've definitely seen it here at West Penn. We've seen it in the NICU and the newborn nurseries."

That includes not just vaccines, but also vitamin K shots, antibiotic eye ointment, and hearing screenings.

"People want to do the right thing, but in the absence of being able to figure out what that is, their tendency is to not do things," said Dr. McCarran.

He said parents cite a range of reasons, including concerns about pain, a mistrust of the medical system, or a belief that "nature knows best."

Dr. McCarran says simply telling parents to "trust the doctor" is no longer effective.

"I feel it's not fair to tell parents to just trust me. I think we're past that these days."

Instead, hospitals are trying to reach families earlier, before delivery, by clearly explaining the risks and benefits of newborn care.

"I think parents want to do the right thing," said Dr. McCarran. "But they're overwhelmed with information from all directions."

He added, "I can sit here and say, well, all that stuff you read online is not accurate, but if that's the best I have, then that's not going to do a whole lot. You have to really provide good info and be empathetic to what their worries are, and in my experience, that's enough to get some of these things done."

Now, Leo is home and receiving specialized care. He's on a strict diet and will eventually need a liver transplant, but doctors say he has a strong chance at a full recovery.

His parents say they're sharing their story to encourage others to carefully consider the benefits of newborn screening.

"They said it's close to a one in a million, so you would think there's no way it's us, but lo and behold, thanks to the screening, we found out, and he got the right care when he needed it," said Debelak.