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My husband said he didn't 'do girl hair,' but our daughter's diagnosis changed his mind

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When we found out we were expecting a little girl, my husband Evan told me one thing: “I don’t do girl hair.”

Braids, brushing, pigtails – forget it. Evan grew up with two sisters and has laughed over the years that any attempts to brush a ponytail up turned disastrous. He was adamant that doing hair was not part of his life skill set.

When our daughter was born, our emotions very abruptly switched from imagining pigtails to a critical prognosis. She was rushed to the nearby Neonatal Intensive Care Unit and diagnosed with a rare, life-threatening skin disorder called Harlequin ichthyosis. The neonatologists had never seen her condition before and simply didn’t know if they would be able to keep her alive.

Our beautiful baby girl, Brenna, spent nearly 6 weeks in the NICU, with periods of very critical health, before we were able to bring her home to become a family of four with our older son Connor and to learn how to care for her skin without the medical staff of the hospital guiding us.

Brenna’s severe disorder means that her skin has trouble retaining moisture, protecting her body from bacteria, and maintaining her body temperature; she is physically unable to sweat. The condition also typically causes hair growth to be very sparse because the body makes skin ten times too fast, which kills off hair follicles.

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When Brenna was born, we could see clumps of dark hair grown into the thick plaques of skin that she was born with, but as those thick pieces of skin began to peel off, they took her hair with them.

So growing hair was something we gave up on early in Brenna's life. Of course, hair was not, and never has been, important to us, and we accepted very early on that she could possibly be mostly bald for her entire life, unless she decides to wear a wig—a choice we are leaving completely up to her.

Brenna’s skin requires a long bath each day, and it always will. In the bath, her body soaks up the moisture, and her extra skin is softened in the water. Each day, her skin grows quickly on her body, building up, and each day in the bath, we scrub off those softened excess skin layers.

At first, Brenna’s head was simply an extension of the skin on her back and neck - smooth and bald. But over time, despite the constant scrubbing, tiny, persistent hairs grew in.

And that same dad who was adamant that he didn’t do girl hair? Well, he became the primary caretaker of our daughter’s emerging locks.

Every day during Brenna's long bath, Evan began to spend the majority of his time on Brenna’s scalp, first rubbing over and over in circular motions with a washcloth in a way that is both gentle and vigorous. Then, he carefully combs out any extra skin that has build up all over her head, taking care not to pull out any strands as he combs.

I have seen this practice become a tangible way for Evan to express love for his daughter. He is most focused on getting the excess skin off her scalp, so that her head is less itchy and less at risk of an infection, which could happen if her skin layers are allowed to build up and crack open. He jokes that if it were up to him, he’d buzz her hair, to make his job of removing skin easier.

But Brenna’s hair has become extremely important to her daddy because he thinks it will be important to her when she is older. He preserves his daughter’s hair with fierce protection and love, just in case we have a 12-year-old girl who wants little braids, or to brush her own hair instead of a wig.

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I witnessed this daily dedication month after month - his tenderness as he has fun gently styling her hair into silly ‘dos and comb-overs and his disappointment if his comb pulls out more than a few strands of hair - and yet it didn’t really sink in until we were at the dermatologist’s office recently, and Brenna’s doctor began to examine her head.

He was pleased and impressed with how long and full her head of hair was, and he commended me for being so careful. I told him that his compliments should be only directed at my husband.

And our doctor smiled, “She may not like it now, or even in the coming years – all of the combing and pulling and scrubbing on her head – but she will thank him someday when she is older.”

Someone who was certain that he couldn’t do a ponytail now puts effort each day into careful and gentle skin care on his daughter’s scalp to maintain her tiny tufts.

Evan not only “does” girl hair, but he is truly the reason Brenna has as much hair as she does.

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