Whelan’s story, along with many other intriguing cases handled by Lepore, are described in the new book “Island Practice,” written by Pam Belluck, a New York Times health writer.
“I didn’t know anything about toe tourniquet syndrome when I had my two kids,” says Belluck. “It’s not in any pregnancy books or first-year books. You’d think the hair would break, but it’s apparently very strong and can get 100 revolutions around a tiny toe if you have long hair.”
The actual incidence of toe tourniquet syndrome is unknown, but doctors have documented dozens of reports of rare cases. The problem doesn’t always involve the toes. A 1988 Pediatrics study reviewed 60 cases of what was dubbed “hair-thread tourniquet syndrome.” Of those, 24 incidents involved toes, 14 involved fingers and 22 painful incidents reported hair wrapped around babies’ genitals, including tiny penises.
As recently as this year, the Hong Kong Journal of Paediatrics reported the case of a 2 1/2-month-old girl whose right fourth toe was inexplicably blue and swollen -- until doctors detected an errant hair and removed it.
Lepore says he’s seen only three cases in his 30 years of practice. But he’s still on alert for the syndrome any time he sees a baby with a discolored toe or other digit.
“You’ve got to have a persistent paranoid suspicion whenever you see something that doesn’t look right -- like a blue or a red toe,” he says. “And you can’t let people blow you off. If your kid’s toe is blue there’s got to be a reason.”
The danger, if your doctor doesn’t recognize toe tourniquet syndrome, is that your baby could lose a toe, Lepore says. Don’t be afraid to mention toe tourniquet syndrome to the doctor if that diagnosis doesn’t get consideration, he adds.