For pediatric resident physicians, the newborn nursery at a high-risk delivery center is a potent mix of the mundane and the terrifying. We spend most of our time teaching new parents how many wet diapers to expect in a day, making slight adjustments to breastfeeding positions, listening again and again to normal hearts. Most babies don’t need a pediatrician at delivery, and these kids simply arrive on our unit, swaddled and ready for life outside the womb.
Sometimes, though, birth is an emergency: the baby has no heart rate; the baby is not breathing. I wear running shoes here even though I’ve lost a pair to bloodstains, so that every time my pager sounds I am ready to sprint upstairs to the labor and delivery floor.
Mid-morning, a nurse calls downstairs to tell us that the mother who will have a C-section at noon is declining the Vitamin K shot for her baby. Although the trend of refusing neonatal Vitamin K feels fresher to me than vaccine refusal, it may just be less publicized. I, like many pediatricians, see an increasing number of refusals.
Jen, my intern, sees me grimace. “We need to go upstairs and talk to her before the birth,” I say. “She’s refusing Vitamin K. Do you want to lead this conversation, or do you want to listen to me?”
“Maybe since it’s the first time, I’ll listen to you,” Jen says.
“OK,” I say. “So let’s go over it first. Why do I care so much that this baby gets Vitamin K?”
“Her blood can’t clot without it,” Jen says.
“Exactly. So the risk of not getting the shot is?”
“Bleeding,” Jen says.
“Brain bleeds and bleeds in the gut are the ones we care about,” I say. “And when might babies who don’t get Vitamin K start bleeding?”
“Um, pretty soon?” Jen says.
“Yup,” I say. Babies are at the highest risk for Vitamin-K Deficiency Bleeding (VKDB) in the first week of life, so the standard of care is to give the shot within an hour after birth. Many parents don’t know that the risk of VKDB is high in untreated newborns: between one in sixty and one in 250 babies who don’t get the shot will have a clinically significant bleed, like a bleed in the gut that makes them anemic or a brain bleed that affects their neurodevelopment.
A small minority of these bleeds will be devastating hemorrhagic strokes, which may leave previously healthy babies with severe brain injury or, sometimes, kill them. The severe bleeds happen later in life, between two weeks and six months of age. They are unprovoked—there need not have been a car wreck, trauma or abuse. There are usually no warning signs until the bleeding is severe enough to cause pressure on the brain.
The Centers for Disease Control, in an appeal to parents, have published a handful of stories from parents whose babies suffered life-threatening VDKB. “Judah’s Story” tells of a healthy boy whose parents declined the shot. At five weeks old, Judah began vomiting. At first, his parents thought he had stomach flu, but by evening he had become lethargic. His folks were getting ready to take him to the ER when he started having seizures. Within hours, the baby was having emergency brain surgery and on his way to a pediatric ICU.
Such bleeding is not among the conditions that doctors are required to report to public health authorities, so we don’t have great data on how often this is happening. Anecdotally, in my three years of residency, I have seen a handful of cases. In every case, it was a healthy kid like Judah, whose life was forever altered by a brain hemorrhage that could have been prevented with a single shot of Vitamin K.
“So what will this mom want to know?” I ask Jen.
“Side-effects of the shot,” she says. (There are none other than pain at the injection site.)
“If there are any chemicals in the shot.” (Our hospital uses preservative-free Vitamin K.)
“If she can wait and get it at her pediatrician’s office.” (Not advised because, again, babies are at high risk in the first days of life.)
Upstairs, Jen and I find the expectant mother alone in her room, waiting to be transferred to the operating room for her C-section. Her husband is home minding the kids. We introduce ourselves as the pediatricians who will be there when her baby is born. “So when Mia is born,” I say, “the OB doctors will hold her up for you to see her. We’ll try to do delayed cord clamping, and then she’ll come over to the baby bed with us for a few minutes. Sometimes babies need a little extra help adjusting to the world when they’re born, so our job is to help her out if she needs that. We’ll warm her up and make sure she’s breathing well, and we’ll get her in your arms as soon as possible.”
The mother nods and smiles, so I continue. “We give three medicines to all babies on the first day of life: erythromycin eye ointment, and a vaccine against Hepatitis B, and Vitamin K,” I say. Erythromycin prevents blindness caused by gonorrheal infection of the babies’ eyes, and the reason we give the Hep B vaccine so soon is because vaccination within twelve hours of life can prevent mother-to-child infections of hepatitis B.
“Oh, I don’t want to do any of that,” she says.
“Tell me more about that,” I say.
“I just don’t think she needs all those medicines right away,” she says. “My midwife told me to say no.”
This genuinely surprised me. Most practicing midwives are nurses, professionals who provide excellent prenatal care and deliver lower-risk pregnancies safely and competently. I was surprised that a midwife entrusted with the health of mothers and babies would give advice that is so obviously unsafe.
We know that babies delivered at birthing centers are less likely to receive Vitamin K. After a cluster of four cases of life-threatening VKDB in Tennessee babies in 2013, a study found that 28 percent of infants delivered at Nashville-area birthing centers did not receive Vitamin K. I had assumed, however, that parents who declined the shot were acting against the advice of the midwives caring for them.
“I know you’ve had good prenatal testing, so in your case I do think it’s safe to hold off on erythromycin and hepatitis B,” I said. “But let’s talk about Vitamin K.”
Jen and I spent some time in the room, trying to ensure the baby’s safe delivery without strong-arming the mother. We did what I think is our due diligence: we said the words “stroke” and “bleeding in the brain.” We promised that we would respect her choice but made it clear that our firm medical advice was to get the shot.
The mother called her husband, and decided she would make a decision after the birth. The surgery went smoothly, and Mia was born vigorous and beautiful. But the mother did refuse Vitamin K. She said she didn’t want to “overwhelm her system with a massive overdose of vitamins.”
It isn’t an overdose, I fretted inwardly. It’s a dose.
Jen encouraged Mia’s mother to talk with her primary provider again about Vitamin K, and we let it go. My attending physician tried to call the midwife, but couldn’t reach her. I was left wondering about Mia’s vulnerability, and how I see it differently from her mother.
Newborn babies are resilient in many ways: they have remodeled their skulls to fit through a pelvis, activated dormant lungs with the first breath of air, opened and closed special passageways in their hearts to match their new extra-uterine environment. Within moments of birth, they are breaking down blood cells and learning to see. I have seen babies born with no detectable heartbeat who get the right pediatric care and are crying vigorously and ready to eat within fifteen minutes of life. An adult could never do that. Newborns are hardy people, in short, and I don’t think a shot can really harm them. A medically appropriate dose of a vitamin can’t overwhelm them. A brain bleed can.
Later in the week, Jen’s co-intern Emily convinced another reluctant mother to accept the shot. This mother simply didn’t know what the stakes of refusal were, and when Emily explained, she changed her mind.
This is the best pediatricians can do: we can be kind, and we can make sure that parents who refuse Vitamin K understand the possible consequences of that decision—as well as someone who has never set foot inside a pediatric intensive care unit ever will. A colleague told me a story about an anesthesiologist who heard a parent say, mid C-section, that she had chosen not to give Vitamin K. The parent was talking to the pediatrician, but the anesthesiologist snorted and said, “That’s a bad choice.” Supposedly, the parent heard him and changed her mind.
The story makes me wonder if I should listen less and be more blunt. But parents are allowed to make choices that put their children in unnecessary danger. They are allowed to weigh risk and benefit on their own scales. They can see a shot as harm. Research has shown that parents who decline Vitamin K are likely to go on to decline vaccination. Like those who refuse vaccines, they tend to be college-educated, white, and born in this country—people like me, whose social privilege insulates them somewhat from ill-health.
Even if my body is insulated, however, my mind is not. I am afraid of giving birth because I have seen women die trying. I am afraid of fever in the first eight weeks of life because I have seen how bacteria can liquefy the brains of children. I am afraid of whooping cough because I have watched a baby’s oxygen levels drop and his heart rate slow, closer and closer to cardiac arrest. I am afraid of nature, because my work has thrust life’s excruciating vulnerability in my face.
Children die of diarrhea and starvation; they are killed in war. Pneumonia is still the biggest killer of children in the world, though we have vaccines that could prevent many of these deaths. In this country, vaccines such as those against Streptococcus pneumoniae, Haemophilus influenzae, whooping cough, and the influenza virus prevents tens of thousands of pediatric deaths every year. The flu vaccine, for example, reduces a healthy child’s risk of dying from influenza by 65 percent—even if they catch the illness despite vaccination. Approximately 80 percent of the 185 American kids who died of flu last year were unvaccinated. If privilege allows some parents to believe that they are capable of protecting their children without vaccines or Vitamin K, my experience in the children’s hospital—where all the sickest children congregate—makes me afraid that we can never do enough to protect the most vulnerable among us.
But parents who refuse preventive medicines such as vaccines and Vitamin K do think they are protecting their children. They tend to believe that children are under constant threat: from toxins, from medical interference, from corporate conspiracy. As the American writer Eula Biss writes in On Immunity: An Inoculation (2014):
So now it is, in the activist Jenny McCarthy’s words, “the frickin’ mercury, the ether, the aluminum, the antifreeze” that we fear in our vaccines. Our witches’ brew is chemical. There is not actually any ether or antifreeze in vaccines, but these substances speak to anxieties about our industrial world. They evoke the chemicals on which we now blame our bad health.
These parents see a vulnerability similar to the one that I see in their children, but in their minds the threats come from society. “We seem to believe, against all evidence, that nature is entirely benevolent,” Biss writes. The way I see it, society is by no means benign, but it does offer vaccines and Vitamin K as safeguards against threats that come from nature.
On a Friday afternoon in my primary care clinic, I see a two-week-old boy who has not received Vitamin K. In conversation, I realize that the mother doesn’t object to the vitamin itself; she objects to the shot.
This family is the ideal target for oral Vitamin K supplementation, an option used as standard of care in the Netherlands. In the US, we do not have an FDA-approved form of oral Vitamin K to prevent VKDB, and there is no evidence that the options we do have (grinding up pills and mixing them in water, or giving the injectable liquid by mouth) are effective. When I tried to prescribe oral Vitamin K for a baby, I got different dose recommendations from two different pharmacists, and neither recommendation was evidence-based. To circumvent this confusion, a children’s hospital in Oregon once devised a standard protocol for dosing oral Vitamin K, but doctors there ultimately abandoned the plan because of the absence of evidence for efficacy—a rational choice when we have a cheap, widely available, and near-universally effective shot.
Pediatricians Melissa Weddle and Carrie Phillipi have argued that American doctors should not recommend off-label use of oral Vitamin K. Even in countries where the proven oral formulation is available, there are treatment failures that would not have occurred with the shot. Oral Vitamin K has to be given several times, at specific intervals in a baby’s life, and studies suggest that many kids won’t get all the prescribed doses. Between this demand for timely repeat dosing and the tendency of babies to vomit oral medicines (or just to vomit, anytime, for whatever reason), some babies treated with oral Vitamin K still develop VKDB. Also, babies who have undetected problems with their liver or gallbladder may not be able to absorb the oral medicine and will remain at risk despite oral treatment.
The safe, effective, and proven method we already have available should be the standard of care for all babies. But there are cases where a family would consent to treatment if only it weren’t for the shot. And even if oral Vitamin K prophylaxis is second-rate care, it is better than no prophylaxis. I wish we in this country would get around to evaluating oral Vitamin K as a second-line option for the minority of babies whose parents are adamant shot-refusers.
“Tell me more,” I say, because I sense that the mother is holding something back.
She looks down into the baby’s face as she replies, so softly I almost don’t catch it. “I don’t believe it is right to pierce his holy body with a needle,” she says.
At that, my heart softens, because this is the kind of objection I feel for. It is not based on risks that science has proven are imaginary, or on false notions of “toxins,” or fear of chemicals that occur naturally in foods and the soil and are added to medicines. This mother’s child is holy, and his body is perfect, and we ought to leave it be.
I agree that they are holy, these pokey, half-myelinated creatures whose needs have woken me from sleep, or kept me from it, a thousand nights. But to persist in my work, I must believe that holiness is inviolable even as the body itself breaks open and bleeds. Babies are holy when they are plump and warm in the newborn nursery. They are holy when they have nasogastric tubes snaking out of their nostrils. Children sedated and paralyzed in the ICU, with surgical wounds freshly bandaged, are holy. Children with double-lumen central lines dripping chemotherapy drugs into their veins are holy. Children reading comics while a hemodialysis machine four times their size runs their blood through a filter, children on heart-lung bypass after drowning in a backyard pool, children who need four IV medicines to make their faltering hearts pump long enough to keep them alive for transplant: holy, holy, holy.
No needle is strong enough to interrupt for a single second the holiness of a child’s existence. This notion that it could seems to overestimate the ontological power of medicine: I certainly infringe on the bodies of children, but I do not believe their essential selves—their spirits, or their holiness, or their souls—can be harmed by a needle. That takes stronger stuff.
It is common for religion to inform how medicines are used. A deeply Catholic mother who fasted three days so Jesus would relieve her son of the symptoms of asthma recently told me that she nevertheless believes albuterol inhalers are evidence of God’s working through physicians’ hands. An observant Muslim mother whose child refused to take pills was delighted to follow my recommendation for gelatin-free gummy vitamins. (Pork gelatin, contained in many medicines, is considered by some haram, although an international council of imams convened by the World Health Organization has recommended that medicines and vaccines be regarded as exempt from the prohibition.) A woman raised as a Jehovah’s Witness told me her family had renounced her for allowing her three-year-old son to receive an infusion of platelets when chemotherapy had driven his own levels so low that he was at risk of dying from a nosebleed.
It is not common, however, for religion to present hard refusals that elide creative work-arounds when the potential consequences of declining to use the medicine are so dire.
The boy who has not had the Vitamin K shot is warm, swaddled, breathing quietly. His heartbeat is regular and his normal newborn’s heart murmur has faded. He is holy; he is perfect. And it is shocking to realize the narrative place my medicines hold in this mother’s cosmos. To her, my shot and I are pollutants. We are the bitter Samaritans, strewing bones through the temple in Jerusalem.
But I am not bitter at my core. I want him to get Vitamin K for practical reasons: so he can stay home safe, in his mother’s arms, with no critical need for my medicines and me. I don’t want him to bleed into his brain. I don’t want neurosurgeons to slice through his skull to relieve the pressure. I don’t want him on a breathing tube in our ICU. The vitamin is preventive, a charm to ward me off.
The mother and I come to understand each other, but we do not agree, and the baby leaves without the shot.
Identifying details of patients have been omitted or changed.