Baby girl born with rare condition that means she sheds her skin 10 TIMES faster than normal
When Anna Riley was born, she "didn't even look like a baby" due to her ultra-dry skin
THE DEVOTED parents of a little girl whose rare condition means her skin sheds at ten times the normal rate have recalled the first “mindblowing” time they saw her.
Jennie and James Riley said that when little Anna was born, she “didn’t even look like a baby”.
The tiny tot was born with harlequin ichthyosis, a condition which causes hard, diamond-shaped white patches to form across her body.
Jennie, 34, had a smooth pregnancy and had no reason to suppose that there was anything unusual about her baby.
But the moment Anna, now 17 months, was born, her skin began to rapidly harden and turn white.
According to the British Association of Dermatologists, the condition occurs in just one in every 200,000 live births.
Recalling the moment Jenny, from New York, saw her baby daughter for the first time, she said: “It was all very confusing as no one knew what it was for a while.
“And I couldn’t understand how something had gone wrong, as throughout my pregnancy everything had gone so well and the ultrasound and stats – or oxygen saturation levels – were all perfect.
“Seeing her was mindblowing, as she didn’t even look like a baby.”
The first warning signs that something might have been amiss was when Jennie’s waters broke six weeks before her due date.
After James rushed her to hosptial, she was given steroid injections to strengthen the baby’s lungs before being forced to have a c-section as Anna was facing the wrong way in the womb.
“Everything was calm and I was feeling eager and excited,” said Jennie.
“No one had any kind of premonition about how things were going to turn out.”
But as the baby was lifted from the womb, Jennie knew that something was up because of the hush that had descended on the room.
“I heard the nurse say, ‘She’s beautiful,’ but then after that there was an uncomfortable silence and I suddenly became very worried,” she said.
As soon as Anna left the womb, her skin immediately dried and formed hard, diamond-shaped white patches – and her eyelids flipped inside out due to the tightening of her skin.
What is harlequin ichthyosis?
Ichthyosis is a term used to describe the constant and widespread scaling of the skin.
It can either be inherited or you’re born with it.
Most of the time, the more common forms of inherited ichthyosis is quite mild and can improve in warm weather but others can be relentless and really serious.
Harlequin ichthyosis is an incredibly rare, and most severe form of the condition which causes the skin to dry, crack and split apart.
It only affects around 5 per cent of inherited ichthyosis cases.
It’s obvious from the moment you’re born, due to the very thick scaling that happens all over and babies have to be given intensive care ASAP.
The main symptoms are:
- dry, scaly skin
- plates of thick skin that crack and split
- distorted and pulled facial features
- misshapen ears
She recalled: “I took her in my arms and she was wrapped up in plastic.
“Her whole body had cuts all over it, caused by the extra layers of skin cracking. The poor thing looked so unwell and her eyes were swollen shut.
“It was so confusing for me as everything had gone so well up until the very last moment and I had no idea what it was all going to mean for her and for us.”
Anna was sent to see a specialist at the Maria Fareri Children’s Hospital, where she was diagnosed with harlequin ichthyosis and was put on a strict treatment plan, to give her the best chance of survival, which entailed being kept in a humidified box and rubbed with Vaseline every hour.
“After a couple of days, I was allowed to leave (the hospital) and go to her at the children’s hospital,” said Jennie.
“We weren’t able to touch her, as the risk from infection is very high with harlequin ichthyosis sufferers in the first few days of life, as bacteria can very easily get into the open cuts on the skin.
“We were told just to take it day by day, as the chance of death was very high.”
But she defied the odds and went home a month later, where she met her brothers for the first time.
“It was amazing being able to take her home at last, after all that waiting wondering whether or not she would live,” said Jennie.
The little girl needs four hours’ worth of baths every day, along with being regularly slathered in lotions so that her excess skin can be peeled off.
Despite all of that, however, Anna is a healthy, happy toddler.
“There are of course difficulties and we are constantly having to think about how her skin might react in different weathers at different times of the year,” Jennie continued.
“And she can’t just go outside to play in the park, as her skin will dry out very quickly and she isn’t able to sweat or control her body temperature either so it can be tough.
“But she is learning to talk now and loves chatting, as well as playing with her older brothers, who are great with her. James, my younger son, was at first a little confused by her condition, but is very loving and protective over her now, singing to her when she cries.”
Her family doesn’t know how Anna’s condition is going to affect her in the future but Jennie’s one hope is that she remains happy.
She said: “In spite of everything she has been through, Anna is the happiest little baby and very rarely complains about the pain she must sometimes be in.
“It is a lot of work each day caring for her skin and there will be challenges ahead for us.
“But her joyful personality makes it all worth it.”
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