“I can sit here and be upset and sad, but this brought me closer to God,” the father said. “I just can’t wait to be with him.”
Two of the families who went on to have other children found themselves facing the same decision: Would they decline the vitamin K shot again? Both got the shot for their newborn.
The wrong trend
Morad watched as the number of families declining vitamin K climbed over the last year.
In January, she reached out to Sidonio, her former colleague who first recognized the 2013 cluster of cases there, for advice. Sidonio, now a pediatric hematologist oncologist at Children’s Healthcare of Atlanta and professor at Emory University School of Medicine, said he’s more worried than ever.
During that cluster, Sidonio recognized the need to collect data on how often parents decline the shot and what happens to those babies. But in discussions with the CDC, he said, he was told that it would be too difficult.
More than a decade later, nothing has come of it. In a recent email to ProPublica, federal officials said vitamin K deficiency bleeding has never been submitted for consideration as a notifiable condition.
“If you don’t track it, you don’t document it,” said Sidonio, frustration building in his voice. “They have to make it a reportable health condition, just like a new measles case. That’s the only way it’s going to change.”
Like him, Dr. Kristan Scott, the lead author of the national study that found a jump in the number of babies not receiving vitamin K, also landed on a need for a robust system to monitor vitamin K refusals and any subsequent consequences.
“We don’t have a clean data repository provided by public health systems or the state that would allow us to be able to track this in a more systematic fashion,” said Scott, who is a neonatologist at the Children’s Hospital of Philadelphia.