Fear and Needles

Before three months passed, I had jabbed my infant daughter with a needle at least a dozen times. The number would have been higher, but most frequently my wife wielded the instrument in her own hand, steadied by two decades of sewing and her own lifetime of blister care. She was very good at it, and I would become very good at it, but in those first months I was afraid.

We were unsurprised when it came to pass. I heard our daughter’s first cry, and then the second sound was our OB/GYN telling nurses, “She’s got what Sara has – look at the thumb – be careful.” And it was true: there was no skin there. In utero, her tiny mouth had sucked it all off. She wanted so badly to suck on it again after birth, but of course we couldn’t let her. We denied her the healing thumb by placing socks over her bandaged hands. It was the ankle that worried us more, actually. The law required a security anklet. She constantly wore specialized bandages developed for burn victims, but nonetheless, 72 hours in the hospital left her with a gash of rawness that took two months to heal.

A few hours ago, her long and perfect fingers played “Ode to Joy” on our thirdhand piano; a few hours before that, she ran the fastest mile of any girl in the fourth grade. It’s hard to connect our nine-year-old to that fragile infant. She has a few active blisters currently (and she probably always will) but hasn’t needed a bandage on an area since a fall at Girl Scout Camp this summer. Just like her grandmother’s and mother’s before her, her skin has grown more accustomed to casual friction as she’s grown. We knew she would have a 50-50 shot at inheriting the dominant gene for epidermolysis bullosa simplex, so we were ready, and we knew from the experiences of her mother and grandmother that as the years passed and the skin toughened, the blisters would grow less severe.

Comfortingly, we also knew it was impossible for her to inherit the recessive gene forms of EB. Barring breakthroughs in ongoing research, those do not get better. People with dystrophic EB experience blistering on a far more traumatic scale: continuous bandaging throughout life, scarring, often fingers and toes fusing. Many afflicted with it must wear shirts inside out because seams cause enough friction to blister, and there’s also an extremely high risk of an exceptionally aggressive skin cancer prior to age 35. Junctional EB is worse, with blisters on internal organs and in the esophagus frequently leading to death before age one.

But my daughter’s condition would have no impact on her life expectancy, and while foot blisters would delay walking by several months, today, her form of EB simplex in no way restricts her day-to-day life. All of which is to say, we are very blessed and had no fear of this familiar hereditary condition. But I wasn’t fully prepared for the needle.

Lancing blisters is necessary. Single use sterile needle, cotton ball to drain. If the blisters grow large enough and get bumped or scraped, they can burst and leave the raw skin beneath, leading to yet more problems. Lancing and draining gives the developing skin beneath the blister protection; small pain prevents big pain. It’s an unpleasant necessity, and not an easy one to explain to a toddler. Her speech didn’t need to develop too far before she could put together the phrase, “No, mama, no!” One of us would hold the tiny crying child still to prevent sudden movements, and the other used the needle. We are thankful that she had not yet developed long-term memory.

She understands it now. By the time she was three she could tell inquisitive adults, “I have a skin condition called epidermolysis bullosa. It’s not contagious.” Around the same time she could use the cotton ball herself, and not long after, the needle, though we still help her with awkwardly placed “bubbles,” as we’ve always called them. Bubble care is a periodic, rather than daily, undertaking.

I still hate it. Occasionally she’ll let up the pressure on the cotton ball a little early, and I have to remind her to make sure to drain all the fluid. “Deal with the pain longer,” in other words. She hurts, but if I tried to keep her from that hurt, I’d only make it worse. Rationally, I recognize it’s the only sensible thing, just as I know I need to let her run down the sidewalk. An incessant chorus of “be carefuls” might make her timid, but it won’t keep her from ever skinning her knee. And once she’s skinned that knee, I need to encourage her to run again, and at some point, I’ll watch her skin it again. This is the formula for growth and resilience. Memories of feeding her, pushing her stroller, or snuggling her on my chest at 3 AM while she screams for the duration of a Truffaut film (subtitles!) don’t enter into this equation; they can’t. Sometimes she needs to hurt.

Adolescence is coming. The needle was the easy part.

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