A recent study in a prominent medical journal indicates that many more families are declining vitamin K shots, which prevent bleeding complications in newborns. The JAMA researchers reported that rates of refusing the preventive health measure went from 2.9% to 5.2% in eight years.
A local expert says his health system estimates locally that the number is likely double, and it’s not just vitamin K shots that new parents are foregoing.
Dr. Bill McCarran, director of the Allegheny Health Network Newborn Medicine Program, said his team is currently examining data about vitamin K administration at all of AHN’s newborn nurseries and neonatal intensive care units, which together care for 7,000 to 8,000 babies per year.
About two years ago, less than 5% of families in AHN hospitals declined the shot. Now, preliminary data indicate that the number is 10% or more, McCarran said.
“Anyone who takes care of babies would have been able to predict that finding. Families are much more likely to decline than they were when I started doing this,” he said. “Declining certain newborn care and newborn preventive measures started with an uptick in the number of babies whose parents elected not to give them the first dose of the recommended hepatitis B vaccine. Then, after that, we started to see an increase in the number of families that elected not to provide ophthalmic (eye) prophylaxis. And most recently, we’ve seen a more significant uptick in declining vitamin K.”
He noted that more families are also declining Pennsylvania’s newborn screening tests for metabolic and endocrine disorders, hemoglobin, congenital heart disease and hearing loss. McCarran said he and his team field a lot of questions about whether these things are important and why.
One baby who is 1 in a million
Megan Popps wishes she could tell her story to every family considering not accepting preventive care and screening.
Her baby, Leo, just marked his three-month birthday. Just days after they came home from the hospital in March, Leo seemed unwell. Then, his newborn screening test results came in, revealing that he has maple syrup urine disease, a metabolic disorder that prevents the body from breaking down certain amino acids, causing toxins to build up in the body.
The disease can be fatal within two weeks.
The state called the hospital, and a nurse called Popps, asking the family to come back to the hospital immediately.
“It just takes one person to be on the other side of statistics, and I want people to understand that. It doesn’t always work in your favor. If you’re that one out of 1,000 or one in 1,000,000, you’re still that one,” she said.
Popps and her family work closely with a team of dietitians and the rare disease team at UPMC Children’s Hospital of Pittsburgh, and Leo has been thriving. He has regular appointments with a team of specialists and a highly controlled diet with a special formula. It is likely that a liver transplant is in his future.
“The things that they are checking for on the newborn screening are things that the earlier you can detect them and start treating them, can make a life or death difference,” Popps said. “Nobody wants to do anything to harm their children; nobody has malicious intent in declining anything. However, the consequences can be deadly.”
Vitamin K by the numbers
McCarran emphasized that an intramuscular shot of vitamin K is critically important. Vitamin K is essential for blood clotting, but babies have a limited ability to absorb the vitamin, which can put them at risk for bleeding complications.
Before vitamin K injection was implemented as part of standard newborn care, 1 in 60 babies experienced bleeding complications in the first year of life. About half of those were serious, and some were fatal. A single dose makes the risk almost non-existent: one in 1,000,000.
“I don’t like to use numbers with families too often, but I think sometimes it does put things into perspective,” McCarran said.
Families cite many reasons for declining a vitamin K shot, and McCarran said he simply tries to empathize with them and give them good information.
“I totally empathize with folks that there’s a lot of information out there. It’s great that we can learn all sorts of things on the internet or through reading. There are so many sources. But I do think it’s very difficult to know what to trust,” he said. “And when you have conflicting information, for some people it’s human nature to go toward less, to avoid intervention.”
One reason families cite is that they think of vitamin K as a vaccine, but it is really a supplement. Another major reason is that there is an oral version available, and parents naturally want to avoid their baby enduring a painful shot if possible.
McCarran said that is understandable, but oral vitamin K requires three doses; the baby often cannot keep it down or absorb it, and the oral version does not reduce the risk as much (more like one in 100,000).
Some parents also have concerns about other ingredients. Some vitamin K shots contain a preservative called benzyl alcohol, but that is also in a lot of other medications, and there are no risks associated with it, McCarran explained. The shots also have small amounts of aluminum, but it is less than a baby would absorb from breastfeeding.
McCarran said talking with families can help them understand, and some change their minds because most hospitals will not perform procedures such as circumcisions on babies who have not received a vitamin K shot.
Simple things with high impact
“A newborn stay is relatively short in the world of hospital stays. It’s 48 hours or maybe a little more, sometimes a little less. A lot happens in those 48 hours to make sure that a baby is safe to go home and ideally gives their parents a lot of peace of mind,” McCarran said. “People may take a lot of those preventive things for granted because they seem very straightforward and very simple. But they really are high-impact things.”
That impact is not lost on Popps and her family.
“The world is entirely too unpredictable to rely on being on the good side of statistics,” Popps said. “And I never would have thought that until all of this happened.”