With bright blue eyes and a full head of curly red-blonde hair, 22-month-old Sylas Ace Bobbitt has a ready smile when he spots one of his family members next to his crib at the LifeScape pediatric specialty hospital in Sioux Falls.

Sylas, the son of Austin Bobbitt and grandson of Wendy Brotherton, both of Huron, was born on March 9, 2019, with a rare condition called chromosome 6 deletion, in which some of the genetic material that makes up one of the body’s 46 chromosomes — No. 6 — is missing.

Like most chromosome disorders, this increases the risk of birth defects, developmental delay and learning difficulties.

“You have 46 chromosomes, 23 from your mother and 23 from your father,” Brotherton said. “His chromosome six is partly there, but in the middle toward the top it’s just gone. It’s just a weird fluke of nature. It’s quite rare.

“He doesn’t have sickness symptoms or anything like that, it’s muscle control, getting his muscles strengthened,” she said. “They do a lot of physical therapy to get his muscles strong enough. He shakes rattles around, and he’s trying to pull his bib off right now. He plays and plays.”

Sylas was born at Masonic Children’s Hospital in Minneapolis, where he remained a patient until he was a year old and moved to LifeScape in Sioux Falls.

“He’s only been outside to go to doctors appointments,” Brotherton added. “He’s not been able to do the things children do — to be in a home environment. We stay at the Ronald McDonald’s House in Sioux Falls. I can’t be here all the time either, I have another son at home, Bailey, who is 17.”

She also has a daughter, Sierra, and her three daughters, who live in Huron.

Right now the family is working with Universal Pediatrics in Sioux Falls, which specializes in home health care and private-duty nursing services for pediatrics patients, to find nurses who can help them when they bring Sylas home.

But finding a nurse or LPN available in this area to help has been a challenge, and until they do, Sylas has to remain in Sioux Falls.

“We’re looking for help to bring him home,” Brotherton said. “Any nurses or retired nurses looking for something to do, we want to get the information to them. A lot of them might be scared to care for these little ones. We just want to get home so we can start to live.”

Brotherton, who dropped out of a nursing program when she was 23 to raise her own three children, said she is beginning online classes so she can return to nursing school in Mitchell next fall.

“I could potentially take care of him for my job,” she added. “We’ve waited so long.

“We’re pretty good about doing things for him, but the ventilator itself we’re not too sure of,” Brotherton said. “We definitely need nurses there to help us. He needs nurses when we’re working or sleeping to watch things and make sure no tube comes loose.”

Austin said doctors knew there was a problem before Sylas was born, when an ultrasound revealed that his heart and one kidney were not growing correctly. His heart, specifically, is in the wrong position in his chest, and is also more directly in the center. He also had a hole between the chambers of his heart, which has since closed on its own.

“When he was born he was not breathing,” Austin said. “That’s when they had to intubate him. Once he was a little older they realized the real problem. He has a flap in his windpipe, when he breaths in air pushes it open, but when he goes to breath out it makes the flap close and he can’t breath out.

“Hopefully that will strengthen as he grows and his windpipe becomes bigger,” he said.

Sylas was also born with a cleft palate, where the roof of the mouth does not fully develop. That has been corrected with surgery, and he’s also had surgery to place his trachea and feeding tubes.

Doctors recently discovered a cancerous tumor growing on his liver, and Sylas began chemotherapy treatments last month to shrink the growth. On Thursday he underwent surgery to remove the growth, and will continue chemotherapy every two weeks for the next eight months.

“He rolls over, but not all the way,” Austin said. “He rolls to his side, and that’s kind of as far as he goes. With the tubing and all that, it makes it harder to roll completely onto his stomach. Keeping his head up straight is kind of a thing he is learning. He is getting better. He doesn’t sit up on his own. He’ll keep his head up a little bit, but his muscles just aren’t there.”

Because of the trachea tube, the only sounds they’ve heard Sylas make have been little grunting noises.

“Sometimes you can hear when he’s crying because the ventilator makes a different noise when he’s upset,” Austin said.

Austin said he watches his son for signs of recognition when he comes into his room.

“After 10 to 15 seconds I see it click in his face — oh, that’s dad. He starts putting his hand over my mouth,” Austin said. “He likes when I talk into his hand. He has hearing aids now, but I would always talk into his hand and he could feel the vibration.”

Sylas weighed almost 5 pounds when he was born, and now weighs 22 pounds.

“When he was born doctors told me to expect these certain things, but they weren’t able to tell me everything would be OK. They’re learning more about this themselves, too,” Austin said. “He seems to amaze me every day how tough he is.”

If you are a nurse or LPN in this area and are interested in providing care to help Sylas come home, contact:

Universal Pediatrics in Sioux Falls
(605) 331-7997
www.universalpediatrics.com