Kansas City Chiefs quarterback Patrick Mahomes and Ellie, a 17-year-old young lady he recently visited at Children’s Mercy (CMH) after her successful open heart surgery, have more in common than you’d think. Patrick is dependent on his gear to protect him pregame, and Ellie needed her protective gear post surgery.
“No one would ever expect an athlete to walk onto the field without a proper uniform, protective helmet and pads,” was my first thought when Ellie’s mom, Amy, excitedly shared this photo of Ellie wearing her AudreySpirit therapeutic garment.
Athletic uniforms visually identify the players’ team and their numbers indicate their position. They use protective and supportive equipment because they are aware they are at risk of getting hurt during a game or of re-injuring the site of a previously healed injury. Ellie’s mom wasn’t going to send her daughter into surgery and its lengthly recovery without her protective gear either.
Born with Down syndrome, 17-year old Ellie never had any indication of heart trouble although defects can be associated with this condition. When Amy learned her daughter’s heart had a hole in it and it was struggling to keep her alive she was completely shocked.
“It was a sock in the gut to hear that your child needs heart surgery,” she said. Although Ellie was nearly the age of an adult, Down syndrome limited her ability to mentally and emotionally process the scope of this news. As devastated as Amy was, she was relieved that the open heart surgery was something that could be planned for. She could share information little by little with Ellie at the rate she could comfortably absorb while minimizing distress. Amy also needed to pursue legal guardianship of Ellie, just in case complications arose after she became 18 years old.
Much like an athlete taking the field on game day, Amy knew Ellie was at risk, too— at risk of severe pain, infection, embarrassment and—all this on top of her completely understandable fear. And, Amy knew Ellie’s chest would be repeatedly exposed to examine the massive surgical cut’s healing progress. For several weeks after the operation, stickers attached to heart monitoring lines would be adhered all over Ellie’s chest, and regular heart scans would need to be taken.
Getting any child to participate in scary, painful and life-disrupting care takes a great deal of prep work and reinforcement by parents. Earning the cooperation of a child with special health care needs takes even more effort. These children have had too many experiences which affect their willingness to continuously comply with testing and procedures. They also are aware that regardless of the success of this most pressing healthcare need, they will emerge from this experience - still different from their peers.
Amy knew she needed to prepare Ellie as best as possible to reduce her anxiety and trust all of her doctors and nurses. She wanted Ellie’s position within the health care team obviously identified as an empowered young lady.
"Once I found out about AudreySpirit shirts, I had to have them for Ellie,” Amy told me. She continued, “I was adamant that Ellie was going to have AudreySpirit shirts. If she had to go through something so invasive, I wanted her to be comfortable. I wanted her to have dignity. I believed they would help speed her recovery, and she would feel good.”
In the recovery room, Amy was astounded at the full rack of machines connected to wires and lines attached to Ellie’s body. All those lines easily and comfortably slid through the gaps in the shoulders of Ellie’s shirt. Amy remembered, ”I changed her shirt while she had a central line, oxygen, and heart monitor leads. I unsnapped the shirt from the shoulders and front and put on a clean one...very simple. Several days after surgery Ellie wasn’t able to raise her arms or stand up straight. These shirts allowed for her arms to slip in without much pain.”
The journey didn’t unfold exactly as planned. After release from the hospital, Amy recounted, “Ellie woke up crying with a pounding headache, a fever and the sweats. I called CMH cardiology. I was told to get her to the ER and they would call ahead to let them know she would be coming. After 4 hours in the emergency room Ellie is being admitted into the hospital. The inflammation and fluid around her heart, that was small last Friday, has now moved up the scale to moderate and she needs steroids to reduce it.” Amy posted to friends and family.
“The first thing I packed were her shirts for the 4 day hospital stay for fluid around her heart.” Ellie was ready and comforted. "Her entire torso could be accessed for wound care, cardiac monitoring stickers and lines, and ultrasounds of her heart without her breasts exposed. She had to get up and walk around the cardio floor and she did it in yoga pants and her Audreyspirit shirt. Other patients were in the generic, thin, open in the back, boring hospital gowns,” said Amy.
Ellie could looked “dressed” and like anyone else when she met Patrick Mahomes and when she had visitors, especially her teachers.
Two-and-a-half months later, Ellie was released from the surgical care program! Her mom has her AudreySpirit shirts packed up for her to wear for her follow-up appointment.
Amy admitted before the shirts were used, when she saw their cost she had “sticker shock” but continued “they are worth every dime.” The cost of the Ellie’s shirts was covered through the Kansas Special Health Care Needs Program, but single mom Amy said she would have paid out of pocket for at least one therapeutic garment.
Even though Ellie had gone through so much, Amy said, “she just looked like a typical teenager. She wore them to every doctor
appointment. She slept in them and wore them at home. They made showerng so much easier because I could just slip them on and off. A t-shirt wouldn't have worked, and a button up shirt wouldn’t have had the openings in the shoulders.”
“Ellie will always wear one of these shirts to all of her doctor visits for her heart,” Amy explains. Continuing, she says “She is a teenager and lives in T-shirts and the Audreyspirit shirts are colorful, soft material and so well made. Ellie enjoys wearing them and I believe they are a symbol of what she went through and how she was a rockstar through it all.”
Ellie says it best, “I love my shirts! I love the colors.” The red one is her favorite. That’s probably not a coincidence since it’s the color of our beloved Chiefs!