Our baby boy was born with ‘butterfly skin’ so delicate we weren’t allowed to touch him until just before he died
A BABY boy was born with a condition that made his skin so delicate his parents weren’t allowed to touch him until just before he died.
Uzziah Bowman was 10 days old when dad Lee, 44, and mum Jade, 30, were able to hold him for the first time.
The little one passed away two weeks later.
Uzziah was diagnosed with epidermolysis bullosa (EB), a rare and serious skin condition, when he was born at Leicester Royal Infirmary on July 24.
He was immediately taken to an incubator and given a breathing tube.
Lee, a carer from Leicester, told The Sun: “You’re basically told your own baby is going to die, and there’s not a thing you can do about it.”
EB is a skin disorder that causes potentially fatal blistering and tearing of the skin.
Only around 5,000 people have it in the UK, and those who do are called ‘butterfly children’ due to their skin being as fragile as butterfly wings.
The Bowman family were told Uzziah had junctional EB, one of the most serious types of the condition, and that he would most likely not survive.
Lee said: “It wasn’t until he was born we had any idea.
“The first thing we did was Google it, which usually gives you the worst-case scenario.
“The first thing that came up was junctional EB.”
During pregnancy, the doctors warned that there may be some chromosomal issues due to Uzziah being smaller than average.
Lee and Jade said they “didn’t think much of it”, and were prepared for Uzziah to have a minor disability.
The pair said they had prepared for a child with Down syndrome – but they never even considered EB.
Jade gave birth eight and a half weeks early on July 24, at 9.08am, with Uzziah weighing 3lb 1oz.
He was in breech position, forcing Jade to have a C-section over 24 hours after her water broke.
Spend and cherish every moment with them
Lee Bowman
“Uzziah was born with the cord wrapped around his neck, he had so many problems,” Lee said.
The parents spotted patches on Uzziah’s arms, legs and neck. He was also missing his right ear canal.
Doctors told the couple their newborn’s skin issues could be put down to EB.
Due to the severity of his condition, Uzziah had a blockage on his intestines and throat that needed to be operated on.
But in a heartbreaking decision, the doctor chose not to perform the surgery because in similar cases, there has been a zero per cent survival rate.
Instead, Uzziah was kept in an incubator for 10 days and given a knitted blue hat and blankets when he was taken out to keep him warm and protect his skin.
He died two weeks later on August 7 and was laid to rest on September 4.
Lee said if there was a message to any parent who has a child with EB, it would be “to spend and cherish every moment with them”.
The family has set up a GoFundMe to raise funds for Uzziah’s funeral and headstone.
Lee said: “We lay our baby boy to rest on September 4.
“Thanks to the donations made, we were able to get most of the costs covered.
“But could people please help towards the cost of a headstone?
“I know we have to wait 12 months, but I’m hoping to be able to get a head-start on the cost.”
What is EB?
EB is a severe genetic skin disorder that affects around 5,000 people in the UK, and only 500,000 worldwide.
It causes sufferers to have very fragile skin, and any trauma or friction can cause painful blisters.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.
In the majority of cases, it becomes obvious that a person has EB soon after birth. There is no cure.
Treatment for the condition aims to alleviate the painful symptoms and prevent infection.
Medical professionals work with families to decide what treatment is best for their child, which could include popping blisters with a sterilised needle and applying protective dressing to affected areas.
Skin is made up of two layers; the outer being the epidermis and the inner layer the dermis.
In healthy skin, proteins hold the two layers together so they do not move separately.
In those born with EB, the layers do not have the protein that holds them together.
It means any movement that creates friction between the two layers creates blisters.
These can develop anywhere on the skin, and the mouth and eyes are particularly susceptible to the sores. Heat exacerbates the condition.
Some sufferers are born with blisters but others will develop them in the first few weeks of their life.