Distraught mum couldn’t cuddle her baby for five months after she was born without skin on hands and feet
A distraught mum of two couldn’t cuddle her baby for five months after she was born without skin on her hands and feet.
Rhiannon Atkinson, 30, was told her daughter, Pippa, now one, had rare skin condition, Epidermolysis Bullosa (EB) which causes the skin on her body to blister and tear when it is touched.
She was devastated and it took five months before Rhiannon was able to hold her baby girl as Pippa was in so much pain.
The condition has left Pippa without 90 per cent of the skin on her hands and feet – she has since noticed to condition spreading across her body.
Now, if anyone carries Pippa or even holds her hand, her skin will blister and tear off causing her immense pain.
Rhiannon, thanks to training from specialist nurses, now knows how to bandage and clean Pippa’s skin to reduce her risk of infection.
She had no idea her daughter had such a rare condition but is now doing all she can to raise awareness.
Rhiannon, from Cwmbran, South Wales, said: “As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water.
“They were red raw and she was whisked off to intensive care.
“Being told your child has an incurable condition is incomprehensible, it broke my heart.
“But then not being able to touch her, or cuddle her for five months was torture.
“I’d never known anyone with this condition so it was a complete shock when we were told it was going to get worse.”
Rhiannon then stayed with Pippa and her husband, Damian, 36, in hospital for 23 days as nurses decided to best plan of aftercare for their baby.
Once she was discharged from hospital, Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months.
Rhiannon added: “When she was born I couldn’t hold her for five months, she was always on a pillow.
“Not being able to cuddle your new-born baby is the worst feeling in the world but it would have caused her too much pain.
“When we would touch her, especially her hands and feet, she would scream out in pain and you could see the true agony on her face.
“Every day I would have to bandage her hands and feet four times per day in five layers of dressing.
“But then when her blisters started spreading it became even harder to keep on-top of her cleanliness.
“She now has blisters on every inch of her body – on her eyelids, in her hair, her mouth and up her nose.
“So we have to clean the house at least 10 times a day, because if dirt gets into her blisters it can cause infection.
“Whenever she gets a blister me and Damian have to restrain her so that we can get the fluid out of her skin.
“That goes against every natural instinct in your body – having to hold your baby down and know that you’re hurting them.”
Alongside all of the maintenance that the family have to endure to keep Pippa safe, it is also a struggle to let her do simple day-to-day things.
Rhiannon, who gave up her banking job to care for Pippa, said: “She is now nearly 14 months old and hasn’t started to crawl or walk yet.
“Because of her blisters the pressure on her knees or feet would cause too much pain.
“Every normal process takes ages too – it takes over 20 minutes to change her nappy because of all of her creams and lotions and 45 minutes to have a quick bath because we’ve got to get all of the scabs off of her.
“I have to change her clothes six times a day too, because her skin bleeds so easily.
“She wakes up at least four times every night screaming out in pain because she’s moved and hurt a blister or touched her skin in her sleep.”
Despite Pippa’s condition covering her whole body, Rhiannon has noticed that she is slowly getting better.
Rhiannon added: “Luckily, we can cuddle her every day now as her EB has slightly improved.
“Because Pippa’s condition is genetic, I’ll never have any more children just because of the risk.
“I wouldn’t change her for the world and we are doing everything in our power to ensure she leads a long and happy life.”
Pippa’s family are now raising money to build a one-bedroom specialist extension to make looking after Pippa easier.
If you would like to donate towards Pippa’s cause you can do so via their Just Giving page: https://www.justgiving.com/crowdfunding/pleasehelppippa
Dr Emma Wedgeworth, Consultant Dermatologist and British Skin Foundation spokesperson: “Epidermolysis bullosa (EB) is a group of genetic skin conditions characterised by excessively fragile skin which leads to easy blistering.
“It’s caused by an abnormalities in the building blocks (proteins) of the skin, which means the skin is less able to withstand friction. Depending on the protein affected, EB varies enormously in severity.
“Some types are life-threatening whilst some types can be relatively mild- albeit very uncomfortable.”
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.