Care for the rare – how CHoR helps make Myles stronger than his Hyper IgM syndrome

Myles Vinson was loved beyond measure from the very beginning, but it wasn’t until he was 11 months old that his parents learned he truly is one in a million. Following his second month-long stay in a pediatric intensive care unit, this time at CHoR, Myles was diagnosed with the very rare Hyper IgM syndrome which would require ongoing, life-saving care.

“Myles' care has been multifaceted over the years. He’s had many doctors’ appointments, several surgeries, a port placement, ultrasounds, labs, but the bulk of what I think of as the care he has received revolves around the infusion center,” said his mom, Heather. 

In Hyper IgM syndrome the immune system doesn’t function properly. Essentially, Myles’ body doesn’t produce its own antibodies, making him susceptible to recurrent and severe infections.

“Communication between immune cells is required for our bodies to make a wide variety of responses against infections. In Hyper IgM syndrome, a communication breakdown locks in the immune system to make only a single type of response, increasing risk for infections,” said Dr. Brant Ward, allergy and immunology specialist. “Myles comes for regular infusions containing antibodies pooled from many donors, which helps to protect him with antibodies that his immune system cannot generate on its own.”

The infusions start with a nurse accessing Myles’ port with an IV needle, which connects to a pouch of the immunoglobulin plasma containing the donors’ antibodies. The whole infusion takes a few hours, with the nurses regularly checking Myles’ vitals throughout the process. In the beginning this was done weekly, but Myles and his family now come every three weeks for infusions.

“Myles has gotten to know the nurses and feels very at ease and comfortable with them. They do their work well, and I’m so grateful for them. I hope they know they rock,” added Heather.

Child life makes infusions more fun

If Paw Patrol is on the TV and toys and characters from the show are around the clinic, you know it’s Myles’ day for an infusion. That’s because his child life specialist, Kaitlyn Call, sets everything up to help normalize the medical environment and provide comfort.

“My role is to help Myles cope with his port access and other elements of his visits to the infusion center to decrease any stress, anxiety or uncertainty he or his family may be experiencing,” said Kaitlyn. “Myles has an endearing love for Paw Patrol. I provide procedural support during his port access by displaying Paw Patrol on the TV and engaging Myles in the content as a developmentally appropriate distraction tool.”

It’s acts like these that have led Heather to describe Kaitlyn as “a bright presence” and someone who “has gone above and beyond for Myles.”

Family and fun help Myles through the hard times too

Of course, Myles’ support system is most firmly rooted in his family.

“His mom provides extraordinary emotional support, always reassuring Myles in his strength and bravery. She and Mr. Vinson are Myles’ greatest advocates, and their bond is very special to witness,” added Kaitlyn.

In a way, Myles supports them too. His witty, zany humor keeps his family laughing, and love beams from his joyful smile.

Myles has come a long way from those scary days before his first birthday. He turns 5 this month, hopefully celebrating with all the things that make him happy – macaroni and cheese, playing with his brother and sisters, cooking with Mommy, riding his bike, telling knock-knock jokes and, of course, Paw Patrol. His friends at CHoR will be wishing him a great big Happy Birthday too!

“After our first hospital stay [at another hospital] we worked with several specialists at VCU. Because of their expertise and good reputation, we decided to pursue treatment at CHoR,” said Heather. “We’re grateful for his quality and personal care. My heart is full of gratitude.”  

Meet our other inspiring 2022 CHoR Calendar Kids.