Olivia Stille was born in April 2016 with congenital muscular torticollis (CMT), a congenital condition caused by shortened neck muscles on one side of the body. But at the time, that was the least of her parents’ concerns — in fact, neither they nor Olivia’s doctors were aware of it yet.
“When I was pregnant with her, I found out she had some heart issues — when she was born, dealing with that was our first priority,” said Burnsville resident Dee Dee Stille, Olivia’s mother.
Olivia also had feeding issues in her early months and was additionally diagnosed with plagiocephaly, a condition in which a baby develops a flat spot on one side of the head.
It wasn’t until Olivia was around 6 or 7 months old that the CMT became apparent during a medical appointment.
“To be honest, I never really noticed it until it was pointed out,” said Stille. “She was already wearing a helmet for the plagiocephaly. Since it was kind of heavy and awkward, I didn’t know what to look for in terms of her movement. But once the doctor showed us, we could see that she was favoring her right side. It turns out that her muscles were very stiff.”
The Stilles were referred to Huff Center Therapies, where they would work with Julie Roueche, PT, to even out Olivia’s muscle strength and balance.
What Is CMT?
Due to the shortened muscles on one side of the neck, CMT can cause an infant to look and tilt his or her head more to one direction than the other, leading to stiffness and balance problems.
“Torticollis, or CMT, is essentially a clinical symptom,” explained Roueche. “You typically see the child’s head tilt to one side with the chin turned to the opposite side. This is mainly due to tightness of a neck muscle on one side — the muscle known as the sternocleidomastoid. Torticollis can occur due to a number of causes, a common one being intrauterine positioning.”
Stille said Olivia found a unique resting place during her natal development — under her mom’s ribs. “She actually has a scar from her nose to her eyebrow that is rib-shaped,” she said. “That’s where she preferred to be; I guess that’s just where she was most comfortable.”
While CMT can seem harmless, it does have negative effects if not addressed. “It can have a marked effect on the child’s motor development,” said Roueche. “It may affect the child’s perception of midline, the ability to hold the head upright and to look to both sides, roll to both sides, sit symmetrically and crawl. Vision could also be affected, and, left untreated, there is an increased risk for scoliosis over time.”
Physical therapy is the best and simplest way to address CMT — and the earlier the better, said Roueche. “With early treatment, there is less stiffness and habit to work against,” she said. “Plus, treatment is much more difficult if the child is already crawling or walking.”
Stille started taking Olivia to physical therapy. They were soon able to do most of the exercises at home, with occasional follow up with the physical therapist. Unlike being in a clinical environment, Olivia loved the home therapy because, to her, it was just like play.
“We made it fun for her,” said Stille. “She would sit on my stomach, and I would shift my weight from one side to another to help her stretch out her muscles. Or, I would put her toys on one side of her and make her reach for them, or get her to turn while playing peak-a-boo.”
“I just incorporated it into our playtime,” continued Stille. “It made it easier on both of us, and since we would play together anyway, it fit into our day nicely. There was no pulling out exercise mats and trying to force her to do stretches.”
Stille said they started noticing improvement in Olivia’s CMT almost right away after starting therapy. Although, initially, their play therapy was almost too effective — Olivia shifted from favoring her right side to favoring her left. However, with a few adjustments, they were able to balance it out.
Roueche said that the therapy for CMT always involves gentle stretching, positioning and strengthening, but is customized based on the age of the child.
“Parental involvement is key,” said Roueche. “I have found that, once they understand the basics of the exercises, parents often come up with very inventive approaches to them — some that I borrow for other parents.”
Stille said Roueche was just as creative in helping Olivia.
“Olivia is very much her own person — and she can be a bit stubborn — but Julie always makes everything fun for her,” Stille said. “She always knew exactly what Olivia preferred to play with and would intuitively pick out toys and activities for her.”
“I feel like we never had to explain anything to the staff; they always just knew what to do and what was best for Olivia — even Donna the scheduler knew us well and was there when Olivia graduated from therapy,” continued Stille. “I just love them. They always gave me the support I needed.”
Julie Roueche, PT, is with Huff Center Therapies.