If Hudson Kietzman wants something, he has the personality and the energy to go after it.
The 7-year-old Columbia boy tells his parents he wants to be a UFC fighter when he grows up. They don't doubt him for many reasons, but one is the moment he forced open a locked wooden door to ask his mom, Shayna, a question while she was in the bathroom. He was 2.
“He is one of the most stubborn and driven children that I have ever met, and I'm not just saying that because I'm his mom,” Shayna said. “He’ll get stuff done if he wants something. He will.”
That event happened at about the same time Hudson was diagnosed with cerebral palsy and hereditary spastic paraplegia. Both are part of a group of genetic nerve disorders that can cause multiple issues — the most common being muscle spasticity, or extremely stiff and rigid muscles.
Shayna and her husband, Dylan, noticed Hudson’s walking milestone didn’t come at the same time as his peers, and his legs turned in at his ankles. He had trouble walking, standing and sitting down without support, and even with support it was often painful. It was like his leg muscles, from his hips to his calves, were constantly experiencing charley horse cramps.
“Hudson is someone who can get through stuff and who is tough and who can see the good in anything,” Shayna said. “His diagnosis didn’t change anything about who he is. As his parents, we had to think about what he needs from us, what’s next, where do we go from here.”
One of their first steps was a referral to the Children’s Therapy Center and Jane Emerson, MD, a pediatric physical medicine and rehabilitation specialist.
As part of MU Health Care’s team-based approach, she and other members of Hudson’s care team worked with his family to create a plan that would maximize his independence as he got older.
“It's very important for kids with cerebral palsy to receive care early on to help them to reach their full potential,” Emerson said. “When I first met Hudson, he was extremely tight in his legs. It was clear that he was at risk of dislocating his hips and multiple other orthopaedic surgeries without treatment.”
Hudson’s care team had many tools at their disposal, including braces and physical therapy. But the most effective were injections: Botox, phenol and nerve blocks were key to making sure Hudson’s muscles didn’t get too tight, and that he wasn’t in too much pain.
Swimming became an important part of Hudson’s exercise routine, and one that always put a smile on his face. Being weightless in the water allowed him to do more and work on his muscle strength. It was also something he could do just like all the other kids.
“Without Dr. Emerson, Hudson wouldn’t be as far along as he is,” Shayna said. “I can’t say enough good things about her. It’s so nice that people like her care, because having kids is scary, and having kids with special needs is scary. We’re very lucky to have her.”
Cerebral palsy and hereditary spastic paraplegia are long-term conditions that either stay the same or worsen with time.
Emerson and Hudson’s care team knew that physical therapy and injections wouldn’t be his best option forever. They also wanted a long-term treatment for Hudson, who received Botox injections every three months for several years.
“Hudson has an amazing personality, and like most kids with cerebral palsy, he doesn’t know his limitations or his ability and finds ways to do what he wants to,” Emerson said. “That’s one reason I love working with kids like Hudson. Unfortunately, there are limitations to what we can accomplish with less invasive treatments. He was a candidate for surgery, and we started talking about that possibility.”
The thought made Shayna nervous — she feared Hudson would need to go to a big city for his surgery and then a lengthy hospital stay there for daily rehab. Then, Emerson introduced Hudson’s family to Carolyn Quinsey, MD, a pediatric neurosurgeon who could perform the procedure Hudson needed at Children’s Hospital. Emerson’s recommendation, and Hudson’s first meeting with Quinsey, convinced the family they had made the right choice.
“I trust Dr. Emerson implicitly with Hudson,” Shayna said. “I was reserved, but hopeful, meeting Dr. Quinsey. When she and her nurse came in the room, Hudson was like, ‘Listen, my legs shake, and that’s my problem. Can you fix this?’ After that interaction, there was something in my head that was like, ‘There’s something special about her.’”
Quinsey felt the same way about Hudson as she talked to him and his family about a surgery called selective dorsal rhizotomy. The surgery would cut a few carefully selected nerves in the spine that were causing Hudson’s muscles to be too tight even while he was resting and help reduce the muscle cramps that would lock his legs.
“Hudson’s a really amazing kid who charms everyone he meets,” Quinsey said. “It stuck out to me that he had incredible family support, and that he had outstanding care, which made it easy for me to step in as the surgeon. Hudson was excited to have his legs be less tight, and his family was grateful they could stay in Columbia, and both of those are gratifying to be part of.”
After a successful surgery, Hudson did inpatient physical therapy at Children’s Hospital, working hard to rebuild his leg strength. His favorite physical therapist, Carson, helped Hudson transition to outpatient physical therapy and knows exactly when to push, when to take a break, and when Hudson, laughing, skips a number when counting exercise repetitions.
“We love Carson, and he made therapy — something that was scary — a lot less scary,” Shayna said. “He’s the first physical therapist Hudson ever worked with, and they’re like friends hanging out at this point. He knows what Hudson needs.”
As Hudson continues to grow, Shayna and Dylan are grateful their son has teams of people who know what he needs and are looking out for him, all just minutes away. He has a world of possibilities in front of him, including walking.
“I don’t know if Hudson will ever walk, but I feel like with Dr. Emerson, Dr. Quinsey and Carson on his team, there's a way better shot of that happening,” Shayna said. “I firmly believe that there’s nothing he can’t do.”