Parents love to touch and cuddle their babies to show their affection, but things are not the same for one couple from California. Their baby has a rare form of skin disease that makes touching her dangerous.
Kirsti and Jason Kinkle can't easily hold their daughter Kiira like most parents do. The baby has recessive dystrophic epidermolysis bullosa, a condition that makes the skin very fragile, it can blister and tear once it is exposed to minor injury or friction such as scratching and rubbing.
Kiira was born on Oct. 22 earlier this year and it did not take long before her parents learned of her condition. A day after her birth, the Kinkles learned that their newborn baby has a disease that would make skin-to-skin contact nearly impossible.
Dystrophic epidermolysis bullosa (DEB), which is caused by a genetic mutation, is estimated to affect about 6.5 per million newborns in the U.S. but the severe autosomal recessive forms of the disease are much less prevalent affecting fewer than 1 newborn per one million.
Children like Kiira, who were born with the condition, are sometimes called "Butterfly children" because their skin is as fragile and as delicate as the wings of the butterfly, and the Kinkles share how this rare disease has made parenting more challenging for them.
"A clothing tag or rough fabric or even me picking her up under her arm can cause blisters," Kirsti Kinkle said. "I can't hold her hand because it's constantly bandaged. There is no skin-to-skin contact."
Kirsti said that she has to wrap Kiira with a soft blanket before she can pick her up. The Kinkles also had to spend up to two hours per day wrapping the baby's fingers and toes as well as bandaging her fist and feet so her skin can be protected from herself and from her two older sisters.
No cure is yet available for the condition. Currently available treatments only improve the condition but not eliminate it. Doctors at Stanford and the University of Minnesota, however, are working to develop an antidote.
The Kinkles hope that attention to their daughter's story could raise more awareness about epidermolysis bullosa and create a positive impact on research about the disease.
"We are in a race against time to keep Kiira's skin and internal organs from deteriorating, so that is why we are pushing so hard for a cure, as I'm sure all EB families are," the Kinkles wrote on their site.
