A mum has shared her heartbreaking story of how her daughter was born with an extremely rare disorder, despite her having a completely ‘normal’ pregnancy.
Angie Foy, along with her husband Kevin, was excited to welcome baby Harper into their family and introduce the newborn to older sister Sam, 25, and brother Jaxon, 13.
According to Angie, now 47, her pregnancy went well with no complications and all prenatal tests, including genetic testing, came back positively.
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However, when Harper was born prematurely Angie knew something was wrong.
“Harper was delivered a month before her due date by emergency c-section after my water broke,” Angie, a real estate broker, and 46-year-old Kevin, a project manager, from Edmonds in Washington, US, told What’s The Jam.
“I was on morphine so I was completely out of it, but as soon as they took Harper out my mother’s intuition kicked in.
“I could read the room and tell from my husband’s face that something wasn’t right.
“The doctor told Kevin to put his camera down and Harper was whisked away.
“They told me she was fine, but there was something on her skin.
“I don’t think even the doctors knew for sure what was wrong, because they had never come across it before – only in textbooks.”
Harper was placed in an incubator to keep her warm and it was a few hours later before Angie could finally meet her baby, although she wasn’t able to hold her.
She said: “Doctors told me that layers of skin had built up in the womb, forming a hard, thick ‘armour’ that covered her entire body – even her eyelids, which had been inverted from the thickness of the plaques.
“Due to the open sores in the cracks, and the uncertainty, I was not allowed to hold our daughter.
“When I saw her for the first time I was so scared, but I instantly had a connection with her.
“I knew she was going to be such a fighter.”
Due to her complex condition Harper was transferred to Seattle Children’s hospital, where she was assessed by a team of specialists from a variety of backgrounds, including dermatology, plastic surgery, anaesthesia and neonatology.
She was diagnosed with harlequin ichthyosis (HI), a genetic disorder that occurs in just one in 300,000 newborns.
According to Angie, the teams worked together to create a one-of-a-kind treatment plan for Harper.
She said: “Soon after birth, the tips of Harper’s fingers on her left hand fell off because the blood flow had been cut off, and doctors tried to save the rest of her hands and feet.
“It was so traumatic and scary, facing the unknown.
“Every day we’d go to hospital and were given the worst-case scenario. We didn’t even know if she was going to live or die.
“It was your worst nightmare.
“My husband, Kevin, suggested making incisions on her legs and arms – like cutting open a plaster cast – to loosen the plaques and release the pressure and get her blood circulating properly.
“The procedure, performed when she was a few days old, was very successful in saving her fingertips and feet, but it left her in more pain.
“The plaques began to fall off – first her neck then her torso and limbs.”
At three weeks old, Angie was finally able to hold Harper for the first time.
She said: “The mask of skin on her face finally came off revealing Harper’s ‘beautiful eyes and smile.
“We got to bring her home [after] three months, but had to adapt to a new routine to try to stop her skin cracking and bleeding as this can lead to infections.”
Harper is now eight and has to have three, hour-long warm baths every day to keep her skin soft. Although it helps, her skin is still very tight.
Angie said: “She makes skin 10 times faster than we do, as she is missing a protein in her body so her body keeps overproducing skin, that is why [she has] such long showers and baths.
“To keep her hydrated and comfortable.
“Harper goes through a 14oz jar of petroleum jelly ointment for severely dry skin every three days.
“We have to put that on her five or six times a day, which ruins her clothes. I spend hundreds of dollars on new outfits for her each month.
“Care for Harper’s skin is a full-time job. It’s not always easy, but for our family, it is our normal.”
Angie describes her daughter’s skin as red, armour-like and dry, and says that sadly the family has to deal with nasty comments from the public.
She said: “Her skin sheds frequently and is especially sensitive to heat and trauma.
“One of the hardest things our family faces is the comments from other people about how Harper looks.
“One grandma asked me why I didn’t put sunscreen on my daughter, as if she was sunburnt.
“I couldn’t believe that came out of her mouth.
“Another time we were in a juice bar and some kids came up to say hi, but their mom grabbed them and told them to stay away because she was obviously contagious.
“I almost flipped my lid that a mom could act so shamefully.
“But, instead, I held my head high, picked up Harper and we smiled at them.
“Still, the daily stares she attracts on the street do not faze Harper.”
But Harper has been defying the odds from day one.
Angie added: “When she was born Harper was given a 50% chance of survival.
“She is thought to be one of only 20 people in the US with harlequin ichthyosis.
“Because of her condition, her skin grows 10 times faster than normal.
“But she still loves to dance, sing, and pose for photos.
“I believe she is here for a reason, to make a difference in this world.
“She was born in a cocoon and now she has emerged into this beautiful little soul.
“We call her our butterfly.”
