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Baby Born With Skin 'Like Fish Scales'


The mother of a baby with an incredibly rare skin condition has described how she thought her baby was dead when she was born.

Emily-Grace Frampton, who is just one month old, was born with thick, dry grey-ish skin, like fish scales.

Doctors have diagnosed her with a rare genetic disorder called collodion which means the baby is born encased in a tight shiny membrane which falls off after a couple of weeks.

They fear it will develop into ishthyosis, a long-term condition leaving widespread scaling of the skin for which there is no cure.

Mum-of-five Natalie Davies, 29, from Gosport, Hampshire, said: "The doctors took her away immediately and I just could not stop crying.
Mercury Natalie Davies.


"She looked very grey and I was worried she didn't look alive.

"At first they told us she had harlequin ichthyosis, which I knew about from watching a documentary, but now they're not sure.

"The doctors do not know what it will develop into until she starts to grow."

The condition is genetic, with both Natalie and her partner Nathan Frampton, 32, being carriers.

Natalie said: "Nathan and I already have a son together, Harry, one, and he is fine.

"We didn't know we were carriers and it came as a total shock.

"When they first told us it was harlequin ichthyosis I was devastated and Nathan was really angry.

"I'd seen the documentary about it and knew what the future held.

"Now we are hoping it will get better as she gets bigger, but based on her condition now I think that's unlikely."


Emily-Grace must have her whole body bathed in oily 50/50 cream four times a day and cannot use conventional baby products.

Natalie said: "The thing I find the hardest is that she doesn't smell like a new baby.

"I have another four children and I know the smell of a new baby.

"We have to put special products in the bath and use different washing powder but none of the products smell.

"I have to think about everything we do with her, I can't just change her nappy, I have to have all the creams and products ready."

Without the special cream Emily-Grace's skin becomes very dry and flaky.

Natalie said: "Her skin is very loose, it looks too big for her.

"I don't know what the condition will turn into in the future."

The ichthyosis support group said: "The inherited forms of ichthyoses are usually evident at or soon after birth and they tend to persist throughout life although some types may improve slightly with age.

"The milder ichthyoses can be well controlled using regular moisturisers, that is bath oils, soap substitutes and moisturising creams.

"The severe forms may make affected babies quite unwell and treatment in special care baby units will help them get over their problems."

By Faye Dobson, MIRROR.CO.UK

SOURCE


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