UZZIAH Bowman, a week-old baby, was born with a rare condition. The British baby has fragile skin, and his parents can’t even hold him. Bowman was diagnosed with epidermolysis bullosa (EB).
Her parents Jade, 31, and Lee, 44, from Leicester, said they were keeping a bedside vigil as doctors waited to see if her condition was stable enough for surgery to remove a blockage in her bowel. Currently, doctors say her fragile condition means she will not survive the operation and she has been given just months to live.
“Uzziah has severe EB. In less serious cases, the child usually has a good chance of living a more normal life,” Lee said.
“However, the doctor said my baby would die. We are speaking out in the hope that other parents can tell us what they have done to help their babies,” she continued.
Previously, Jade was told by doctors that Uzziah might be born with a chromosome problem. This was said when Jade went for her 20-week pregnancy scan. However, Jade and Lee did not think too much about it and were prepared for Uzziah who might have a minor disability.
Jade gave birth on Thursday (24/7) at 9.08am at Leicester Royal Infirmary. Uzziah was born weighing 3lb 1oz or around 1.39kg.
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“Uzziah was born with his umbilical cord wrapped around his neck, he had a lot of problems,” Lee said. He was missing his right ear canal, had a patch of skin growing where it should have been, and his parents had patches of skin implanted on Uzziah’s arms, legs and neck.
Currently, Uzziah is in an incubator due to jaundice. In addition, medical personnel are waiting to see whether Uzziah is in a stable enough condition or not to receive further treatment.
Epidermolysis Bullosa (EB)
Based on Uzziah’s case, EB is a severe genetic skin disease that affects around 5,000 patients in the UK, and only 500,000 worldwide. EB is a rare condition that causes fragile, blistering skin.
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The skin has two layers, the outer layer is the epidermis and the inner layer is the dermis. In healthy skin, protein unites the two layers, so they don’t separate.
In those born with EB, the layers lack the protein that holds them together. This means that any movement that causes the two layers to overlap will result in blistering.
These blisters can appear anywhere on the skin, especially in the mouth and eyes, making them prone to injury. There is currently no cure for EB.
Treatment is aimed solely at relieving the symptoms of pain and preventing infection. Possible symptoms of this condition include skin that blisters easily, thick and misshapen nails, thin skin, acne-like bumps, tooth decay, difficulty breathing, and painful or itchy skin. (News UK and Mayo Clinic/Z-3)
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