Overcoming the odds
Family shares story of baby born with limb deformities
When Logan Williams was born in the spring of 2014, doctors told his parents he would never stand or walk, and likely never move his arms.
But Janie Deering and Gordie Williams, who live in Salmon Cove, refused to give up on their blond-haired, blue-eyed baby boy.
Diagnosed with arthrogryposis multiplex congenita (AMC), Logan was born with several limb deformities. His legs were turned with his knees facing backwards and his feet were twisted. His arms and hands were curved. He had almost no use of any of his extremities. Approximately one in 3,000 babies are born with AMC.
Although most expectant mothers are notified of the disorder when it is detected during an ultrasound, Janie said she was never told. In fact, she only knew after he had been born.
“They said after I had him, ‘I think we should bring him up- stairs,’” Janie said. “I just went white.”
Logan was immediately brought to the Janeway Children’s Health and Rehabilitation Centre in St. John’s, where he was formally diagnosed with the disorder.
For 25 days, the family stayed at Ronald McDonald House while Logan was at the Janeway.
Gordie decided to start researching. He learned more about Logan’s condition and tried to find ways that he and Janie could help his progress.
But doctors at the Janeway were not optimistic.
“They said he would never walk,” Janie said.
Making a plan
After several weeks of visits with doctors and other medical professionals, Logan had not made any progress. But Janie and Gordie were not about to give up hope. They wanted to take a more aggressive approach to ensure they were doing everything they could for their child.
That was when they came across the Shriners Hospital in Montreal, which primarily deals in orthopedic issues in children.
Janie called and told them the situation. It was the Friday of a long weekend in July, and the staff had gone. She was told they would call her back next week, but she was skeptical.
“I didn’t think they would call back,” Janie said.
But they did, and immediately set up a connection with the local Shriners to make arrangements for Logan’s first visit.
Shriners covers the cost of flights for the patient and one caregiver to Montreal, so whenever anyone else travels — plus additional accommodations — the costs come out of pocket.
After Logan’s initial assessment, the doctors asked for him to return for four or five weeks for surgery and treatment. Janie brought her oldest child Lilly with her and Logan to Montreal.
For three weeks he was getting serial casting, where they would reposition his feet and recast for several days, then repeat the procedure.
When Logan had the surgery to release the tendons in his feet, Gordie flew up with their other son Lucas.
Since then, the parents alternate going to Montreal with Logan every two weeks. They have made 33 visits to date, a second surgery to allow his knees to bend took place, and his casts were removed. He will need another surgery and will continue to wear his leg braces as long as they are needed.
Meeting with other people in similar situations has helped the family. Logan’s new friend Dallas and her mom Jacqueline Carrier from Saskatoon are also patients of Shriners. His family appreciates having them around.
Now 14 months old, Logan has made substantial progress.
Janie shared a photo of him standing up by himself holding the family’s ottoman a couple of weeks ago.
“May not be a big deal to most parents, but this is another accomplishment for Logan,” the caption read.
Since the beginning, the family has been doing aggressive and consistent physiotherapy and stretching with Logan. And he is getting more agile and can now feed himself.
Gordie explained they are determined to beat the odds and show the first doctors who said he would never walk that with perseverance and hard work, there can be results.
“I’m hoping by like age four or five, Logan is going to be walking,” he said. “I’d like to see him walk into kindergarten.”
“Of course I would love him to walk and be able to do his daily care,” Janie added. “Also I want him to be comfortable with himself and not fell different from his peers, to have good self confidence.
The next step is a customized pediatric walker, which is not covered by the province’s Medical Care Plan (MCP). But they haven’t given up hope.
“We will do what we can to make sure everything that can be done for Logan is,” Janie said. “He’s worth it.”
The family gets asked a lot of questions about Logan’s condition. That is why when June 30 was proclaimed Arthrogryposis Awareness Day in Newfoundland and Labrador, they were excited to share Logan’s story.
“I decided to open up about Logan to help educate people on AMC and help them understand what he deals with from day to day,” Janie explained. “And we are so happy to receive the community support we have been. We are so thankful.”
Some of the most common things that Janie and Gordie get asked include whether Logan will ever walk, is he in pain and when will the travelling end.
“Only time will tell,” Gordie said about walking, although they have high hopes. “And he’s not in pain.”
Janie added that the travel may not be over for a very long time, depending on Logan’s progress. He can be a patient of Shriners until he’s 21.
“We will do what we can to make sure everything that can be done for Logan is. He’s worth it.”
Logan Williams, who has arthrogryposis multiplex congenita, has been standing with the assistance of stationary objects around the house for a few weeks, after being told he would never stand.
It has been a year of ups and downs for the family of Logan Williams of Salmon Cove, who has arthrogryposis multiplex congenita. Members of his family are, from left, Lucas (brother), Gordie (dad), Lilly (sister), Janie (mom) and Logan.