Parents’ sadness when their baby is born with skin so fragile they can’t hold it and doctors think it will die before Christmas

A BABY born with an extremely rare skin condition, which means his skin is as fragile as a butterfly’s wings, may not live to see Christmas.

Uzziah Bowman, who is just over a week old, was born with epidermolysis bullosa (EB) – one of half a million babies worldwide with the condition.

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Tragically, his skin is so fragile that his parents cannot hold him.

His parents, Jade, 31, and Lee, 44, are keeping bedside vigil as doctors wait to see if he becomes stable enough to carry out an operation that could prolong his life.

Doctors, who only gave the baby a few months to live, believe his fragile condition means he would not survive surgery, his parents say.

Now, Lee and Jade are desperately talking to find out what other parents of children with EB have done.

Lee, a carer from Leicester, said: “Uzziah has a severe case of EB.

“In cases that are not so serious, the child generally has a good chance of having a more normal life.

“But the doctors are saying my baby is going to die.

“We hope other parents can tell us what they did to help their babies.”

Jade was told at her 20 week scan that Uzias may have been born with a chromosomal problem.

The pair said they “didn’t make much of it” and were prepared for Uzziah to have a mild disability.

Jade gave birth eight and a half weeks early on July 24 at 9:08am, weighing 3lb 1oz at Leicester Royal Infirmary.

Uzias was in a breech position, forcing Jade to have a C-section 24 hours after her water broke.

“Uzziah was born with the cord around his neck, he had a lot of problems,” Lee said.

The parents noticed spots on Uzziah’s arms, legs and neck.

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He was also missing his right ear canal.

Doctors told the couple that the newborn’s skin problems could be attributed to severe EB.

EB is a serious genetic skin disease that affects around 5,000 patients in the UK and just 500,000 worldwide.

The skin is made up of two layers; the outer layer is the epidermis and the inner layer is the dermis.

In healthy skin, proteins hold the two layers together so they don’t move separately.

We have a very, very short deadline with him

LeeFather of Uzziah Bowman

In those born with EB, the layers lack the protein that holds them together.

This means that any movement that creates friction between the two layers creates bubbles.

Blisters can develop anywhere on the skin, and the mouth and eyes are particularly susceptible to sores.

Heat aggravates the condition.

Some patients are born with blisters, but others will develop them within the first few weeks of life.

There is currently no cure.

Treatment for the disease aims to alleviate painful symptoms and prevent infections.

There are three main types of EB and many more variants of the disease, with experts currently identifying 27 in total.

‘JUST PIECES OF SKIN’

Uzziah has a very serious form – 90% of babies who have it fail to survive their first year, according to the NHS.

“We can’t even tell the full extent of this at this time,” Lee added.

“He’s in an incubator at the moment – ​​because he also has jaundice.

“They gave him a little hat, so we couldn’t see him properly.

“There’s no right ear there – just bits of skin.”

While the little one needs an operation to fix some of his other unrelated life-threatening problems – like a blockage in his intestine.

But his parents claim doctors told him his skin was too weak and he would not survive the operation.

Lee said: “We have a very, very tight deadline with him.

“I have absolutely no idea what my options are.

“My son is seriously ill with this condition.”

While the doctors do the best they can for Uzziah, Lee and Jade need to have genetic blood tests to see if they carry EB.

“Uzziah is just being fed nutrients at the moment,” he added.

“A specialist EB team came from Birmingham Children’s Hospital to help our baby.”