A Washington mother said she has to bathe her baby in bleach to help him shed his skin due to a rare disease which leaves him covered in scales.
Alicia Barber, 27, washes Jamison, 1, in Clorox bleach twice a week for 15 minutes before exfoliating him with a mitt to rub away hard skin and ward off infection.
Jamison suffers from Harlequin ichthyosis, a severe skin disease caused by a genetic mutation which affects around one in 500,000 births.
Infants with the condition are born covered with a hard layer of protein in the outer layer of the skin, which forms scale-like diamond-shaped plates, separated by deep cracks.
The keratin shell makes it near impossible for those with the condition to move around freely and can cause breathing difficulties as well as leaving sufferers at high risk of infection.
Barber, a former waitnress who is now Jamison’s full-time caregiver, learned of the devastating diagnosis while seven months pregnant.
She was initially expecting twins following a battle with fertility issues, but one fetus died in the womb. Learning that the second baby might not survive was a difficult blow.
Medics recommended Barber terminate the pregnancy, but despite being given just a two percent chance of survival, Jamison has defied the odds to make it to his first birthday.
But the disease means he must endure a grueling treatment regime which includes bleach baths and a prescription of morphine to help ease the excruciating pain.
Barber said she has also struggled with comments from cruel strangers who called her son ‘creepy’ – and said she is keen to raise awareness about the little-known condition.
“I had never heard of Harlequin ichthyosis before the doctor took me aside and showed me a text book with pictures of babies with this condition,” Barber said. “They had no faces, no hands, no feet and no fingers and toes.”
“It was really traumatizing and they recommended that I terminate the pregnancy,” she said. “While deciding what to do I was told I’d gone past the point of termination so I had to go full-term. It was scary, I didn’t know what was going to happen with him and the birth was pretty traumatic as well.”
“I had an emergency C-section because they were concerned that a natural birth would cause tearing of his skin fissures,” she said. “I also needed 4.5 blood transfusions and didn’t get to meet him for a few days. I broke down when I saw him – I wanted to hold him and tell him it’s going to be OK. I knew he was going to fight.”
The skin abnormalities associated with harlequin ichthyosis disrupt the skins protective barrier, making it difficult to control water loss, regulate their body temperature, and fight infections.
It means Jamison requires round-the-clock care and the family gets 187 hours-a-month appointed care from their hospital.
He must take two-45 minute baths per day during which he is bathed in water and rubbed with a sandpaper rag to help him shed his skin.
Doctors also prescribed Jamison baths in household bleach, the type you buy at the grocery store. He has two of these per week for around 15 minutes.
“It is painful for him so he is on morphine, which is scary because he has respiratory issues and it can slow things down and make him sleepy,” Barber said. “He does accidentally swallow the bleach when I’m pouring it over his head and it occasionally gets in his eyes. It is something I dread because he is in pain. He does cry and I have cried quite a few times.”
“If he didn’t have these baths he could end up in the hospital with an infection,” she said. “We have to keep a very, very tidy, clean home at all times and check him every couple of hours for any sign of skin infection.”
Barber, who lives with her partner Kolton Stam, 26, has two other children, Jamison’s older brothers Dustin, seven, and River, six.
“At first they were a bit scared of him but that quickly changed,” she said. “They kept worrying and asking, ‘how long have we got left with him?’ We do get comments from strangers and the worst ones are about us being neglectful.”
“Someone said we were bad parents letting him get so sunburn because his skin is quite red in appearance,” she said. “Once a child said that he looked really ‘creepy’ which was quite upsetting.”
“It’s so rare. Jamison is about 1 in 100 people in U.S. living with this. I really want to do what I can to educate people and advocate for his condition,” Barber said.
Alicia and her family are hoping to raise money to attend a medical conference in Nashville specifically on Harlequin ichthyosis.