Born with a rare genetic mutation, one-year-old Jamison Barber was born with a rare skin mutation called Harlequin ichthyosis which causes his skin to be covered in hard scales. Jamison requires rough exfoliation to avoid complications as well as bleach baths twice a week to ward off infection.
Occurring in one in every 500,000 American children, the disease often leads to breathing and mobility problems.
The toddler’s mother, Alicia Barber, was told she was infertile in 2013 due to endometriosis. After undergoing surgery in 2016 to remove scar tissue related to the disorder, Barber got pregnant. Barber Discovered she was carrying twins, but sadly one twin didn’t survive – and not long after, she was told the second child most likely wouldn’t either.
The 27-year-old admitted when she was told of her second child’s complications, she had never heard of the disease.
“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,” she told Fox News. “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.”
Before making her decision, her pregnancy had progressed past the point of termination. Barber was left to worry about the fate of her child until she could deliver at full term.
“It was scary, I didn’t know what was going to happen with him and the birth was pretty traumatic as well,” she said.
After going through an emergency C section and four blood transfusions, the child was born – and immediately admitted into the Neonatal Intensive Care Unit (NICU).
“Despite what the [doctor] said, (he would be stillborn) I delivered Jamison. He came out crying and I knew he was going to fight,” wrote Barber on a GoFundMe page. “While in recovery, I kept asking to see him. He was alive!”
Today, the baby is one year old and requires constant care – including two 45 minute baths each day, weekly bleach baths and exfoliation rubs with a sandpaper towel.
“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,” said Barber. “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.”
While public opinion on her son has varied, Barber is hopeful that by sharing his story she can raise awareness of the disorder and learn how to better provide for her one-year-old.
“I hope to have this experience to gain more insight on how to care for Jamison and meet his needs better, build new relationships with families who understand, and bring back what is learned to his specialists/providers so we can give Jamison the best life he deserves in working together for him.”