As a first-time expectant mom, Lacy Kennedy couldn’t wait to meet her son, Silas. She delivered by Cesarean section and doctors immediately saw that something very serious was wrong with Silas.
Silas was born without a majority of the skin on his legs. He was missing skin on his feet and hands as well and what skin he did have was blistered. Even his tongue and lips were blistered and bleeding at birth. Doctors didn’t know what was wrong.
“I didn’t know if it was a birth mark,” Lacy said. “Is this serious? Will it go away? The doctors were trying to figure out themselves. I was terrified.”
Within two hours Silas was transported to Kosair Children’s Hospital (now Norton Children’s Hospital). Lacy and Silas’ dad, Jason Bartley, arrived in Louisville the next day. Doctors performed a biopsy on Silas’ skin, which came back inconclusive. After 10 days of treatment and testing, the young family was transferred to Cincinnati Children’s Hospital. There a blood test and genetic testing diagnosed Silas with Epidermolysis Bullosa (EB), a rare disease that causes fragile, blistering skin. According to Lacy, Silas’ skin is missing a connecting protein that attaches the epidermis to the dermas. They were told that any trauma to his skin, even slight bumps, would cause their son’s skin to fall off or blister.
“They determined our genetic makeup created the perfect storm for this to happen,” Lacy said. “Being my first child, I was nervous anyway. You just don’t want to hear that anything is wrong with your child.”
The couple stayed in Cincinnati with their son another 10 days while doctors and nurses taught them to care for him. Extensive bandaging was required to help Silas’ fragile skin heal. Jason remembers being in a full medical gown, gloves and mask, bandaging his son for the first time. “I’ve got my son in front of me, and I’m looking at my hands and they’re just covered in blood,” Jason said. “I remember thinking to myself, if I can do this, then we’re OK. We are going to be fine when we get home. If I can do this, I can do anything.”
Lacy agrees, “Day one was the worst, but it just got more manageable every day.”
For the first 18 months of Silas’ life, Lacy and Jason adhered to a strict bandaging routine. Each finger and toe was bandaged along with his legs. A bandage change took two to three hours every day. The process was time consuming and tedious and if Silas leaked from his diaper or spit up (as every newborn does), bandages would have to be redone.
After several months, Silas’ skin began to grow, and at 9 months he was able to move his fingers. Skin and tissue also began to grow on his feet and this miraculous boy skipped crawling altogether and started walking around this time too. “He had to adapt because he couldn’t put pressure or friction on skin,” Jason said, which would have occurred with crawling.
Now that Silas was mobile, both parents admit they were nervous about their son injuring himself. Any simple tumble could lead to severe wounds. Jason said Silas’ knees were constantly scabbed.
“I couldn’t protect him from every little bump and bruise,” Lacy said. “Once you have seen so much blood from your own child, you kind of get tougher skin.”
But EB wouldn’t be the end of the Silas’ tough journey. Silas’ local pediatrician diagnosed him with autism at 14 months. At this point, Silas, who is now 4, was non-verbal. “At first we thought it was maybe due to his isolation,” Jason said of his son’s delayed speech. “Because of EB, we had to protect him from germs because he was so prone to infection.” But Silas is still non-verbal and suffers from other side effects of his autism, like tugging his hair to the point of pulling it out.
“With autism, he never really had interests until the last year or so,” Lacy said. “Kids with autism tend to line things up or organize by color or classify them that way. Once he found out that Thomas the Tank Engine existed, he was like, ‘I need all of these.’ So we just went with it. He likes this, he can have all of it!”
Silas has recently been excelling at a new communication system. Lacy has index cards displayed on her wall with simple words on them like food, drink, etc. Silas can read what the card says and can take it to his parents when he wants to communicate.
Children with autism tend to perform repetitive behaviors—for Silas this is jumping. But jumping with EB can cause significant injury to his skin. “Our hearts would stop with every jump,” Lacy said. But Jason says he has built up callouses on his feet to allow him to jump, Silas’ doctors are always surprised that his jumping doesn’t cause damage.
Silas will continue to battle the blisters and wounds caused by his EB, but larger issues will arise in the future. Children with EB experience difficulty swallowing and have digestive issues because the lining of the esophagus and stomach are prone to the same blisters as his skin. Doctors may have to dilate Silas’ throat, expanding it with a balloon because he often chokes on food.
Because of his autism, Silas has an intense reaction to anything involving his mouth and due to his EB, a toothbrush feels like steel wool on his gums. For these reasons, brushing Silas’ teeth is nearly impossible and is causing dental issues that will have to be addressed by a specialist in Cincinnati.
“Despite all of his challenges, he is such a sweet boy,” Lacy said. “With the way he looked when he was born, I thought he would have to eventually use a wheel chair or have prosthetic limbs. I never expected everything he has accomplished.”