There was no indication there would be anything different with baby Anna’s health when she was in the womb, or even after her birth, but what happened to her skin minutes after she was born changed the course of her childhood.
Anna Wilklow, of Highland, New York, was born with a rare condition called harlequin ichthyosis, a genetic disorder that causes babies to be born with very hard, thick skin covering most of their bodies.
To treat her skin, the 15-month-old spends about four hours in the bath every day – twice in the morning and twice at night. Once a week, her mom Jennie Wilklow bathes her in bleach to make sure her skin doesn’t catch infection. When she falls asleep in the bath, Wilklow peels the thick skin off her head and body so it will heal properly in her older years.
During the time Anna spends outside the bath, her mom covers her in Vaseline, Aquaphor and various other lotions to prevent her skin from drying out. Every day, Anna consumes 2,100 calories – the same amount of food as a grown adult – to help fuel her skin for the rapid growth process.
But despite this daily process, Anna is a happy-go-lucky little girl who gets along well with her two older brothers.
“She likes to eat and play and she’s just a very happy baby all the time,” Wilklow said. “I don’t want her to grow up and feel like her whole life is her skin.”
Wilklow said she and her husband had no indication their daughter would have the severe condition until after she was born.
“I heard a cry, and the nurse said, ‘She’s beautiful,’” she recalled. “I was smiling, I was happy, I was relaxed. It was probably within a minute or two I kind of started hearing muffled voices.”
The doctor gave her more anesthesia, and she was in and out of consciousness over the next several hours, only waking to ask for her husband.
“He just said, ‘It’s bad, […] but I looked into her eyes and she has the most beautiful soul,’” Wilklow said. “At that point, I had no clue how critical she was.”
She later found out that the baby's skin hardened just minutes after exiting the womb, and began cracking as it got too thick. Anna’s eyes swelled shut and her eyelids flipped inside-out as a result of the thick skin.
“Her toes were on the bottom of her feet,” Wilklow said. “Her skin was so tight around her hands, the circulation was being cut off. She was going to lose her toes and her fingers.”
Doctors at her local hospital said little Anna was bound to get an infection and they would opt out of treating it to let the newborn pass naturally. But her family got in contact with a specialist on the disorder and sent baby Anna to a different hospital that was more equipped to treat her skin.
“She can’t die, that wasn’t an option,” Wilklow said.
Doctors carried out a minor surgery to make sure she wouldn’t lose circulation in her hands and feet, and kept her in covered in Vaseline and a humidity-controlled room for the first month of her life.
The day they went home about a month after her birth was another difficult moment in the family’s life, Wilklow said.
On the first day they took her out of humidity control, “she was crying and she was in pain. Her skin became hard, it was like leather. She started to crack. It was like her birth – less severe, but all over again,” she said.
They returned her to the NICU and tried to take her home the following day, this time, covered in Vaseline and placed in a plastic bag to hold the moisture in.
“I was mortified. I was confused. I couldn’t see past that point,” Wilklow said. “It was scary because you couldn’t see past a time when this won’t happen.”
But over the months to come, Wilklow and other family members have tried different methods, and her skin slowly improved.
Her community, however, only sees the happy, lovable Anna.
“She’s more than her disease,” Wilklow said.
To support her family, visit their GoFundMe page.