When Casey McKay went in for oral surgery last summer, his family braced themselves for the worst. Not because of what they thought the doctor might find when she worked on his teeth, but because Casey was having a really rough year.
Casey, 19, has severe cognitive impairment and significant developmental disabilities brought on by a rare genetic disorder called a chromosomal translocation of 7 and 14. At conception, fragments of these two chromosomes broke off and swapped places, disrupting his healthy development.
As a result, Casey’s life is full of challenges.
The Grand Rapids, Michigan, resident is mostly nonverbal and struggles to communicate his needs. He walks with difficulty. He has multiple severe food allergies and requires constant care.
Behind his bright, beautiful smile is a complex young man who experiences sharp ups and downs. He loves music, pinwheels, and hats—and he is easily frustrated and agitated, according to his mom, Amy McKay.
The worst valley
When Casey entered puberty as a late teen, things at home took a difficult turn—especially for Amy and her partner, Phil Schaafsma.
Once he “transitioned into massive adolescence,” Casey became increasingly unpredictable and aggressive, Schaafsma said.
And because he had crossed the legal threshold into adulthood, Casey lost access to the state-funded social and medical services available to Michigan children with special needs. As his mom scrambled to find new doctors and other service providers, his medications went unregulated while his behavior spiraled out of control.
“It was beyond awful,” Schaafsma said.
“The worst valley we had been in with him, ever,” Amy added.
In the middle of this turbulent time, Casey developed severe tooth pain.
Because he was 18, his previous pediatric dentist would no longer treat him. Amy asked around and eventually found Aretha Yamusah, DDS, MPH, a local dentist in private practice who accepts Medicaid.
Dr. Yamusah was eager to help.
“It’s about serving the needs of the community, serving the needs of a person who needs your help,” said Dr. Yamusah, who has a background in hospital dentistry. She devotes a large part of her practice to treating patients with special needs and others who are underserved, such as refugees.
“That’s what I love to do,” she said.
Because Casey can’t tolerate sitting in confined spaces, he needs to be sedated for all dental work—even cleanings. This time, he needed four extractions in addition to some fillings and a cleaning.
That’s how he ended up on the oral surgery schedule at Spectrum Health Helen DeVos Children’s Hospital last July. Dr. Yamusah is one of about eight dentists and oral surgeons who are approved to treat patients in the hospital’s surgical suites.
As Casey’s treatment date approached, Amy grew increasingly anxious. She expected a struggle.
“He really freaks out in small places,” she said. “He needs real special attention.”
Add to that the fact that Casey, who has hypoglycemia, wasn’t allowed to eat or take his regular medications before surgery—and that once they arrived at the hospital they learned his surgery time was delayed—and it felt as if a perfect storm was brewing.
“Oh, we were nervous,” Schaafsma said. “We thought it was going to be an utter disaster.”
Thankfully, it turned out to be anything but.
The children’s hospital set just the right tone for Casey, his mom said.
“It was a really settling, comforting, entertaining experience,” she said. “He had wonderful distractions to look at. We walked into a very welcoming environment.”
There were two secrets to Casey’s success that day, Amy said—the “phenomenal” hospital staff and the technology they used to create a calming atmosphere.
The main attraction was a Vecta multisensory machine, an interactive device that, at 5 feet high, transforms any patient room into a low-stress, calming space. The portable machine incorporates colored lights, mirrors, a bubble column, music, a projector and tactile strands of fiber optic LED lights for patients to engage with.
Thanks to the Vecta, Casey “was an absolute angel” before and after surgery, Amy said.
“That machine made all the difference in his experience—that and the very understanding nursing and support staff that was there,” she said.
Christine Zylstra, RN, was the pediatric surgical nurse assigned to help Casey that day. She remembers how well he took to the Vecta machine and how excited Amy was about it.
“We take the whole room and make it not a hospital room, you know?” she said. “It’s always satisfying when you can make an experience a positive one.”
Looking back on the experience, Schaafsma considers Casey’s outcome astounding.
“The fact that he maintained his even nature … it was nothing short of a miracle,” he said.
This year, in early March, Casey returned to Helen DeVos Children’s Hospital for follow-up dental treatment performed by Thomas Burdo, DDS. With help from the hospital’s child life staff, the Vecta machine again worked its magic for him.
Now that Casey is a young adult, his family isn’t sure how much longer he’ll qualify for services at the children’s hospital, but they’re grateful for every opportunity, Schaafsma said.
“It’s such a great resource for the community,” Schaafsma said.
In addition to being inspired by the staff at the children’s hospital, Amy also draws inspiration from her son and others who have special needs.
“I am so proud of my child for navigating the world with the challenges he has and overcoming the stigma—becoming part of our community,” she said.
People like Casey may be “born in broken bodies, but their soul and their hearts are whole—and we have a lot to learn from them,” Amy said.