A 1-year-old baby in Washington with a rare skin disease has to take painful bleach baths every week just to stay out of the hospital.
The Birth Of Jamison Stam
In 2013, doctors told 27-year-old Alicia Barber that she was infertile because of endometriosis. She had surgery in 2016 to correct the problem and was able to conceive again.
In October 2016, Barber discovered that she was pregnant with twins. One child was absorbed during her pregnancy, and she was told the other one would not survive. However, that baby did survive. Jamison Stam was born in May 2017. Upon his birth, doctors diagnosed the infant with harlequin ichthyosis and gave him no life expectancy.
About one in 500,000 babies are born with harlequin ichthyosis, a rare skin disease, including about seven births every year in the United States. The disease results in patients having thick plate-like scales of skin that pulls really tight. Eyelids might be stretched and breathing might be difficult. There could also be swollen hands and feet.
"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."
Although Barber admitted she was depressed, she eventually decided to dedicate her life to her newborn son.
The Bleach Baths Every Week
Since Jamison requires round-the-clock care, Barber serves as the full-time caretaker. Jamison's dad helps out when he is not at work. Since Jamison's skin can't handle any harmful bacteria normally, Barber must disinfect everything he touches every day. Exposure to any bacteria could land Jamison in the hospital.
To keep Jamison clean from infections, doctors recommended that he bathe in bleach. Since Barber wants her son to survive, she administers the baths to her son.
Jamison is subjected to two 45-minute bleach baths every week. To keep him clean and remove any bacteria, Jamison's mom and dad use a sandpaper rag and an exfoliating mitt.
Barber said that the baths were painful to Jamison, so they gave him morphine. However, the morphine made it difficult for him to breathe.
What Barber Hopes For The Future
Barber desperately wants her son to have a better life, and it is taking a toll on their family.
"Some days I wake up and I think how am I going to get through another day," she said.
Barber set up a GoFundMe page to raise funds so that she can attend a national conference for harlequin ichthyosis in Nashville. The conference will provide more insight into how they can care for Jamison, and she can connect with other parents of children with the disease. As of June 21, the campaign raised over $22,000.
