Doctors at Monroe Carell Jr. Children's Hospital at Vanderbilt have seen a rise in late-onset vitamin K deficiency bleeding in young infants due to parents declining the shot at birth.
Over eight months, Vanderbilt physicians saw and diagnosed seven infants, ages 7 weeks to 20 weeks, with vitamin K deficiency bleeding (VKDB), formerly known as hemorrhagic disease of the newborn. Four of the infants had intracranial hemorrhaging, with two requiring urgent neurosurgical intervention, and another with bleeding from the intestines.
They recently published their findings in the journal Pediatric Neurology, and are calling for a state and national tracking system to understand how many infants are not receiving the preventive vitamin K shot at birth and the need for better education and awareness for providers and families. Unfounded fears and misinformation that the shot causes leukemia, is a toxin or is unnecessary in uncomplicated births may be leading some families to turn it down.
"There is no national tracking of this in the U.S. unfortunately, and cases are rarely reported," said Robert Sidonio Jr., M.D., M.S., assistant professor of Pediatrics in the Division of Hematology/Oncology. "We are probably just seeing the tip of the iceberg and I worry that people are missing these cases often and not considering this diagnosis when presented with a sick infant."
Sidonio, the lead on the case analysis, co-authored the article with Vanderbilt physicians Rachael Schulte, M.D., Lori Jordan, M.D., Ph.D., Anna Morad, M.D., Robert Naftel, M.D., and John Wellons III, M.D., MSPH.
Newborns are at risk for VKDB and subsequent bleeding unless given the preventive shot at birth. Vitamin K, needed to help blood clot, is produced naturally by the body within the gut or can be consumed in leafy greens. Due to infants' immature clotting systems, their bodies are initially unable to produce enough of the vitamin. Also, breast milk alone does not provide sufficient levels, regardless of the mother's diet.
The American Academy of Pediatrics has recommended the single-dose shot of vitamin K at birth since 1961. Most cases seen today are in infants in the first 6 months of life who did not get the shot and are exclusively breastfed or who have an undiagnosed liver disorder.
Following a recent rise in cases in Tennessee, the U.S. Centers for Disease Control and Prevention (CDC) investigated and found 28 percent, or 61 of 218, of parents of children born at local private birthing centers in the state declined the shot. Symptoms of VKDB can include vomiting, overt bleeding, poor feeding, lethargy, pallor and bruising.
Mark and Melissa Knotowicz declined the shot for their twins, Silas and Abel, following their birth in July at a local Nashville hospital.
"From the information we had, we heard the main side effect was a preservative in the shot that could lead to childhood leukemia," said Mark Knotowicz. "We thought, 'we don't want our kids to have childhood leukemia' so we declined it without really hearing any of the benefits."
At about 6 weeks old, Silas was noticeably fussy. He vomited overnight, woke up extremely pale and wouldn't nurse. The twins had a checkup scheduled that day. The pediatrician suspected sepsis, a life-threatening blood infection, and told them to take him to the Emergency Department at Children's Hospital.
Because of a rash of VKBD cases, Children's Hospital ED staff had received additional education. After Silas' parents confirmed he had not been given the vitamin K shot, CT scans and blood work revealed he had suffered multiple brain bleeds.
Silas received a double dose of vitamin K to get the bleeding under control. His twin, Abel, was diagnosed with asymptomatic vitamin K deficiency, also receiving the shot. Silas spent a week in the hospital. Today he undergoes physical therapy for neuromuscular development issues. Any effects on cognitive development aren't yet known.
"The twins' cases highlight our inability to determine which infants will go on to develop vitamin K deficiency bleeding, as they both had prolonged bleeding times at presentation," said Sidonio.
Mark Knotowicz wishes medical staff at the birthing hospital had more clearly defined the risks.
"Why didn't they say 'there have been four other cases in Nashville and we're trying to prevent a lethal brain hemorrhage in your child?'"
Anna Morad, M.D. director of the Newborn Nursery at Vanderbilt, has worked to raise awareness about vitamin K and educate families in the community and on the labor and delivery floor at Vanderbilt.
"After our educational outreach, we have seen a decrease in our refusal rates (with about 3.4 percent of parents declining vitamin K). Our goal is to fully educate parents on the risk of declining so they can make an informed choice for their baby," Morad said.
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