With one hand on her pregnancy bump, Leeanna Bentley waited patiently for her baby to move, feeling deep down that something wasn’t right.
It wouldn’t be until Caiden was born months later, causing the delivery room to fall silent, that she’d get answers.
Leeanna, 35, from Sheffield, held her baby Caiden for the first time after his birth three weeks prior
Though doctors had reassured her that her unborn baby was healthy, Leeanna had been worried for the majority of her pregnancy.
Leeanna, 35, from Sheffield, became concerned four months into her with Caiden. Hours would pass as her baby ‘slept’, unmoving in her tummy.
The mum-of-seven tells Sun Health: “I have older children, so I knew what to expect in pregnancy. He wasn’t at all, and I was so concerned that I went to hospital. But all the checks showed he was absolutely fine.
“The pregnancy was normal except that I hardly felt him move, he didn’t hiccup or wriggle or cough, as my other babies had.”
Leeanna went into labour five weeks early, at 32 weeks, in June 2019.
When Caiden was born, she says the delivery room fell silent in shock.
Caiden was born wrapped in a yellow wax-like membrane.
“Caiden was literally trapped by his own skin,” says Leeanna.
“He looked like a little Oompa Loompa when he was born, because he was yellow.”
Leanne says: “I got to see him briefly, and he was encased in a thick yellow wax.
“His fists were clenched, and his eyelids were inside out. He was rushed away to special care, and I was panic-stricken. I had no idea what was wrong.”
Caiden was diagnosed with congenital , a condition where his skin grows and
“He looked like a little Oompa Loompa when he was born, because he was yellow,” says mum Leeanna
Caiden was extremely fragile when he was born five weeks early – not only because he was premature, but because of a disorder that made his skin shed rapidly
Caiden is now six years old and has complex needs based around his skin
He was born in what is called a collodion membrane, which is a shiny, tight, clear or yellowish film covering the skin. It can cause the eyelids or lips to turn inside out.
He was placed in a humidified incubator to help the membrane crack and shed, after which there is inflammation and redness of the skin.
Over his life, he will face constant management of his symptoms.
Everyone sheds skin. But in ichthyosis (of which there are 20 types), a defect means that this process of skin growing and shedding is different.
Dead skin cells shed too slowly, leading to a build-up of the outer layer that causes dry, scaly or thickened skin.
Caiden may face scaling, redness, dryness, pain, itchiness and the complications of an impaired skin barrier.
He picks up bugs so easily and each one could kill him.
LeeannaCaiden's mum
When the skin barrier is impaired, it means more water is lost from the skin. Body temperature regulation is more challenging, there is a higher risk of infection, dehydration and its complications, such as kidney injury.
Caiden’s type (CIE) affects only one in 300,000 people worldwide, Leeanna says, and Caiden was the first baby ever to be born at Barnsley Hospital, South Yorkshire, with the condition.
There are some milder forms of ichthyosis, like ichthyosis vulgaris, and those that are life-threatening, like .
VULNERABLE TO DEADLY BUGS
Leeanna says: “The doctors were brilliant, but they were very honest and said they’d never had a baby like him before. They were learning, just as I was.”
Leeanna was desperate to hold her baby but he was so fragile she couldn’t.
She says: “Caiden was two weeks old before I was allowed to hold him, and even then, I had to wear gloves.
“I could not kiss him because his skin meant he was so vulnerable to infection.
“We had to be careful that he didn’t pick up any bugs.”
Caiden was allowed home three weeks later, but it was only the start of a difficult learning curve for Leeanna, who says she had “no real support”.
“He had to have cream over his whole body every two hours, so I barely slept,” she says.
“He needed 45-minute baths, and he had a lot of medication.
“His skin was bright red, like a little tomato, and when it peeled off, he would cry in pain.
“I could not kiss him because his skin meant he was so vulnerable to infection,” says Leeanna
Leeanna was left to go home and figure out how to care for Caiden all by herself with “no support” What is life like for someone with ichthyosis?
Ichthyosis is a group of rare skin conditions that cause dry, scaly skin.
It’s usually something you’re born with, but it can happen later in life.
The NHS says it cannot usually be cured, but there are treatments to help the symptoms.
The skin is constantly regenerating by shedding and replacing cells. This does not happen properly in people with ichthyosis, which is a genetic condition.
Whether old skin cells are shed too slowly or new skin cells are reproducing too quickly, the result is a build-up of the rough, scaly skin condition known as ichthyosis, says the Ichthyosis Support Group .
Symptoms
The main symptom of ichthyosis is very dry, scaly skin that may also be thick and rough.
Ichthyosis can sometimes have more severe symptoms, including:
- blistered skin
- a thin yellow, shiny layer on the skin at birth that dries out and flakes off
- hair loss
- tight skin which can make moving the affected area painful
- skin infections
- sweating less, which can lead to overheating
- problems with hearing or eyesight
Living with ichthyosis
A person with the condition may have:
- A skincare routine that involves frequent and rigorous application of moisturiser, which can be time consuming and take over life
- Discomfort and pain due to the itchiness, painful cracking of the skin, and tightness
- Increased risk of infections
- Temperature regulation issues – inability to sweat and therefore a risk of overheating
- Mobility issues due to the thickened skin restricting movement
- Mental health issues or general self-consciousness
“It was very difficult to see him suffer, especially when I didn’t know how to make him better.
“I did lots of research myself and connected with other families around the world who have children with ichthyosis.
“Slowly, we got into a routine and despite everything, Caiden was a happy little baby.”
However, aged four months, Caiden was diagnosed with and almost died.
Leeanna says: “The reality of his condition really hit us when he got meningitis.
“He picks up bugs so easily and each one could kill him.
“In hospital, the skin grew back over his cannula as soon as the nurses had put it in. It felt like his body was fighting against the medicine.
“We were told he might die but incredibly, he made it through. He is a little warrior.
“We were so worried about him, we didn’t even know if he would survive, and yet, he has grown into a happy, smiley little boy.
“I take all my strength from him. He’s an inspiration.”
CHEEKY CHAP
Now aged six, Caiden faces many challenges.
The skin in his ears and eyes grows so fast that he has sight and hearing problems. He has no fingerprints.
Leeanna says Caiden’s skin condition leaves him in agony
He also has sight and hearing problems as a result
Caiden’s skin grows and sheds at different rates to normal, which can cause a painful build-up of dead skin cells
The skin can crack and be sore
He cannot go out in warm or cold weather, and his home must be kept at a constant 20 degrees.
Leeanna says: “The cycle is continuous, starting with red, dry skin which sheds and then regrows.
“It doesn’t happen in separate stages – his skin might be shedding whilst also regrowing. It’s not a set pattern and it never stops.
“His fingernails have to be cut every three days; they grow quickly too.
He was bullied a little at first, because the other children didn’t understand why he looks different. Now, they’re more accepting of him and he feels welcomed.
Leeanna
“If he has a cold or a minor infection, he can shed five layers of skin at once, like an onion. This is why he has to be kept away from bugs. It’s as though his skin is aggravated by the infection.
“His skin is very itchy, and he likes to have his lotion on and his special suit, so he can lie on the sofa.”
“The only thing that really bothers him is his hair. He tells me he would love to have hair, but his skin grows and sheds too quickly for that.
Leeanna is fundraising for a nano bubble machine which will ease Caiden’s pain at bathtime by helping him to shed skin more easily.
“The bubble machine will penetrate deeper than water and it will help to hydrate and to heal his skin,” she explains.
“His skin comes off easily but the machine will help it shed with less discomfort. It is the only thing I can find which I think will help ease his pain.”
When Caiden was two, Leeanna fell pregnant with twins. And while she and her partner, Lee, 47, were excited, they faced a dread.
Leeanna says: “The pregnancy was a surprise, and we were told the twins might have Congenital Ichthyosis also.”
The couple were warned their twins faced a 50/50 chance of having the condition.
CIE is an autosomal recessive condition, meaning a child must inherit a copy of the faulty gene from both parents.
But Samuel and Everlin were born perfectly healthy in April 2021.
Leeanna says: “There were incubators on standby, when they were delivered. It was such a relief when they were both OK.”
“It’s hard for him watching his siblings run around the garden, but he is remarkably upbeat. He’ll just stay indoors and play instead.
“He’s a smiley, cheeky little boy and he is remarkably cheerful. He loves Peppa Pig and he likes playing on his swing. He likes motorbikes too.
“He has a place at a mainstream school where he has specialist support. When he’s well enough, he likes to see his friends.
“He was bullied a little at first, because the other children didn’t understand why he looks different. Now, they’re more accepting of him and he feels welcomed.
“It breaks my heart to see him suffer, but I take my strength from him. He is so positive and makes me very proud.”
You can donate to Leeanna’s GoFundMe here.
Caiden wishes to have hair but his skin condition prevents it from growing
Leeanna with Caiden next to her, and his siblings 
