A rare disease makes these young girls’ skin break and peel at the slightest touch, like a butterfly’s wings
(Washington Post) Every morning, Kevin Federici pulls on a head lamp, sterilizes a sewing needle and prepares to prick his baby girl all over her tiny body. She fights him with everything she has, kicking, screaming, writhing as Kevin’s mother-in-law tries to hold her granddaughter still. This process can take three hours, sometimes four or five.
And seven hours after it ends, Kevin’s wife, Heather, begins it again. Crying as her baby cries. Desperate not to cause more damage to a body already covered in blisters and wounds.
It seems like torture. But this is treatment. And for a little girl born with “the worst disease you’ve never heard of,” it’s the only one available.
Baby Elizabeth was a long time coming. Kevin and Heather met in the Army in 1997. They married seven years later. Both left the military for national security careers and were intent on getting their financial ducks in a row before having kids. And even when they were ready, a baby didn’t show up right away, so they traveled the world running marathons. But after one long run near their suburban Baltimore home in 2015, Heather felt especially queasy — and then elated as a second pink line materialized on the stick of her pregnancy test.
In March 2016, after 40 uncomfortable weeks, Heather felt her first contraction. Kevin met her at the hospital. Nine hours and four pushes later, their daughter was born. She had a round face, strong lungs and, as the nurses quickly discovered, no skin on the tops of her feet.
Soon there were 10 people in the delivery room. Someone was on the phone with the Centers for Disease Control and Prevention. As Heather lay in bed, doctors asked her again and again whether she had herpes. “No,” she told them.
Doctors consulted with a pediatric dermatologist, who offered a diagnosis: epidermolysis bullosa. Babies born with EB are often referred to as “butterfly children,” because their skin is as fragile as a butterfly’s wings. One nurse, changing Elizabeth’s diaper, wiped the skin off her bottom. Another gave the baby a pacifier that ripped off the skin around her mouth. Open wound. Open wound.
Nine days after Elizabeth’s birth, Kevin and Heather were sent home with a pack of diapers, bandage supplies and a baby they were scared to touch.
“Why are they letting us bring her home?” Heather remembers thinking. “We didn’t know how to take care of her. We didn’t know what to do.”