Baby Has to Bathe for 4 Hours Each Day to Keep Skin From Cracking, but ‘She’s Incredibly Loving’

January 15, 2019 Updated: January 15, 2019

A baby is forced to take several baths every single day because if not, her skin begins to crack, due to a medical condition, according to her mother.

Jennie Wilklow, of New York, said her daughter, Anna, bathes around four hours per day because of her rare condition, harlequin ichthyosis.

It’s a genetic disorder that causes babies to be born with thick, hard skin covering most of their bodies.

Anna was born with harlequin ichthyosis, a rare condition that causes newborns to form thick plates of skin that split and crack around their body.

People 发布于 2019年1月14日周一

“Things were all seemingly perfect. Moments after her skin hit the air it began to harden and then split causing open wounds all over her body,” Wilklow, 34, told People magazine on Jan. 14, referring to her daughter’s C-section birth in September 2017.

She said, “For months her skin had been building up but now out of the womb it became dry and hard, like armor.”

Wilklow recalled the shocked look on the faces of doctors and nursing staff when the child was delivered, saying Anna’s eyes were swollen shut and her circulation was cut off in her hands and feet.

“The doctors and nurses were visibly shaken,” Wilklow said, “and my husband sat silently in the post-op room.”

A toddler with a rare condition bathes for four hours a day to prevent her skin from hardening. https://ietv.co/2A4XX6N

Inside Edition 发布于 2019年1月9日周三

According to the First Skin Foundation, harlequin ichthyosis is an “extremely rare form of ichthyosis and the most severe.”

“The newborn child is covered with plates of thick skin that crack and split apart. The thick skin plates can pull at and distort facial features. The tightness of the skin pulls around the eyes and the mouth, forcing the eyelids and lips to turn inside out, revealing the red inner linings,” said the website.

Treatment for the disease involves an intense skin care regimen. Those who suffer from it have to have the skin moisturized and soft to prevent infections.

Wilklow said she covers Anna in Aquaphor, an ointment, every few hours.

“I decided to stop work and stay home with her fulltime to give her everything she needs and I couldn’t be happier with my decision,” said Wilklow. “She has a lot of challenges, but she never complains so neither do I.”

Anna consumes about 2,100 calories per day, which is a huge amount for an infant, due to the large amount of extra skin her body produces, her mother said.

“We have to adjust to the heat, the cold, and her skin,” Wilklow added. “[We have] her multiple two-hour baths a day and daily caloric needs, and we have weekly occupational therapy and bi-weekly physical therapy.”

Wilklow explained that her daughter is a happy-go-lucky child who gets along well with her brothers.

“She likes to eat and play and she’s just a very happy baby all the time,” Wilklow told Inside Edition. “I don’t want her to grow up and feel like her whole life is her skin.”

“Anna’s personality is always happy and incredibly loving,” Wilklow added of her daughter, according to People. “She steals people’s hearts because even when she is dry and uncomfortable, she’s always smiling.”

Before her birth, Wilklow and her husband didn’t have any idea she would have the rare skin condition.

"As they tried frantically to help her, her skin hardened within seconds. After hardening, it began to split, causing…

LittleThings 发布于 2018年12月13日周四

“He just said, ‘It’s bad, […] but I looked into her eyes and she has the most beautiful soul,’” Wilklow added to Inside Edition, referring to what her husband had told her after the C-section. “At that point, I had no clue how critical she was.”

But, “I heard a cry, and the nurse said, ‘She’s beautiful,’” she also stated to Inside Edition. “I was smiling, I was happy, I was relaxed. It was probably within a minute or two I kind of started hearing muffled voices.”

Wilklow said she hopes that the girl’s story will inspire others to focus on the positive side of things.

“I have learned everything from Anna,” she adds. “To trust myself, to be kind to myself, to wake up every day and try harder than the day before.”

“You can choose happiness. It’s really not about what happens in your life, but instead how you choose to move forward,” she added. “Every morning I wake up and look over at the biggest smile and all I can feel is lucky.”

A GoFundMe was set up for the family in December, and it has since raised more than $6,000 to help provide care for Anna.

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