Eighteen-month-old Taylor McGowan has a shock of blond hair that obeys no brush or comb. And if it reminds you of Albert Einstein’s famous mane, you’ll understand why her parents made her a Facebook page called Baby Einstein 2.0.
“When we say ‘please show me your hair,’ she proudly points to it,” says Taylor’s mom, Cara McGowan. “We thought it was really cute and thought eventually it would fall out, as most baby fluff does eventually. But for Taylor, that was not the case.”
The little girl’s standout ’do first caught her parents’ eyes when she was 5 months old. After it showed no signs of relaxing, Cara and her husband, Tom, searched online for explanations. They started to suspect Taylor might have uncombable hair syndrome, a rare genetic disorder that changes the shape of hair shafts.
The condition only affects the hair on your head, and clues of it can become noticeable when you’re as young as 3 months old. Bit by bit, your hair gets more and more dry and unruly. It may stand out or grow in different directions. And it gradually turns straw-colored or silver-blond. Some children with the disorder also have bone or eye problems, but that’s less common.
Taylor was healthy, and the McGowans only had a hunch she had uncombable hair syndrome. They wanted to find out for sure, but the condition is hard to confirm, with only 100 or so reported cases of it.
So the Chicago-area couple reached all the way out to Europe for answers. They contacted Regina Betz, MD, a researcher in Germany who helped discover gene mutations that can cause uncombable hair syndrome.
The McGowans sent Betz samples of their blood and Taylor’s for testing -- and the results soon confirmed their suspicions. Cara and Tom both carried a mutated gene called PADI3, and by chance Taylor inherited a copy of it from each of them. Having two copies brings on the disorder.
“And that's how she ended up expressing her beautiful hair,” Cara says.
Betz says there’s no real treatment for the disorder, although conditioner might help tame it a bit.
Otherwise, some doctors recommend biotin supplements, says Meghan Feely, MD, a board-certified dermatologist who practices in New York City and New Jersey. She’s treated a patient with the disorder.
Feely says people with the condition should use brushes with soft bristles, and they should avoid excessive heat, chemical relaxants, and other harsh hair treatments.
When a child with the disorder hits puberty, there’s a chance their hair could relax on its own, she says.
Cara McGowan knows this, but she still wants to give Taylor the confidence to be proud of her hair no matter what. That’s what inspired her to launch the Baby Einstein 2.0 page.
“We want to explain to her that, yes, she is different and unique, but that we celebrate it and embrace it,” she says. “There's no reason why we can't love one another or ourselves for things that are different about us.”