Being surrounded by love is healing. When a patient and their family is surrounded by their friends, their community and a compassionate care team, they can find new strength every day. Nothing could be truer for Kane and his mother Shannon. Though they live in Belgrade, Kane is known and loved by the Logan Health Children’s pediatric subspecialists in Kalispell, who help him face the multitude of health conditions caused by his Trisomy 9 mosaicism. In doing so, they have become like family and have found themselves inspired by his constant courage and perseverance.
Kane has faced medical hardships from the very beginning. Shannon shared Kane had his first episode at two months old. “He started turning blue at night and having a lot of trouble feeding. I think I took him in and out of the emergency room a dozen times, and they couldn’t figure out what was wrong,” she recalled. “They decided to do an echocardiogram when he was three months old, and within five minutes of doing the echocardiogram, we were told to calmly pack our things and go to the NICU.” Kane required immediate treatment for a severe coarctation of the aorta, a condition where the aorta narrows and restricts blood flow. After receiving surgery to correct this in Seattle, Kane was tested and diagnosed with a very rare genetic disorder called Trisomy 9 mosaicism. With this diagnosis, it was understood that he would need lifelong medical care and monitoring by a team of compassionate and caring pediatric subspecialists.
Rachel Desimone, APRN, is one of those subspecialists, a nurse practitioner specializing in pediatric surgery at Logan Health, who met Kane when he needed surgical management for severe reflux. He was less than a year old at the time. “Prior to Kane, I had never cared for a child with Trisomy 9,” she said. “Trisomy 9 is an extremely rare genetic disorder in which the entire 9th chromosome appears three times rather than twice in some cells within the body. This results in a broad spectrum of symptoms for children who have this disorder. It can affect every system in the body from intellect and neurologic complications to craniofacial features, cardiac, gastrointestinal and urinary findings and complex musculoskeletal problems. Kane has experienced problems with nearly every system of his body due to Trisomy 9.”
For Shannon, this diagnosis was discouraging, but she held on to her hope. “I felt fear and uncertainty for his future. His medical appointments seemed to suggest that, with his diagnosis, he might not survive, or he might not ever walk or talk, but I was really determined to beat these odds because I wasn’t willing to give up on Kane,” she said. Kane was not ready to give up either. He has received numerous surgeries and procedures, including placement of a feeding tube, a cecostomy tube, removal of his adenoids and multiple hernia repairs. He is also currently preparing for an upcoming ileostomy procedure.
To help assist his recovery from these procedures, Kane engages in many different types of therapy, including feeding therapy, speech therapy, occupational therapy, physical therapy and pelvic floor therapy. Fortunately, he has a pediatric team just as diverse as his needs. He regularly meets with Rachel, his pediatric surgery provider; Dr. Nicholas Fleming, a pediatric physical medicine and rehabilitation provider; Dr. Dmitry Tchapyjnikov, a pediatric neurologist, and Dr. Campbell, a pediatric rheumatologist, in addition to an ear, nose, and throat doctor and an orthopedic surgeon.
Within this team, Kane has a special affinity for Rachel. “He absolutely loves Rachel,” Shannon said. “So, having her on Kane’s team — even if she just stops by when we’re in the hospital and gives him a hug — that really puts a smile on that boy’s face.” Rachel has witnessed almost all of Kane’s journey and has built his treatment plans with great care. “Kane is a unique child with unique needs. His system-wide complexity has forced me to think outside of our standard textbook and create unique treatment plans that meet his multisystem and developmental needs,” she said. Rachel does everything she can to help Kane and his family. She travels to Logan Health’s specialty outreach clinics in Missoula and Bozeman to see Kane in person a few times each year. She also has telemedicine visits with Kane and his family, so that he can be assessed without leaving home, and she communicates regularly with Kane’s family through emails and phone calls. The efforts are well worth it. “Watching him grow and thrive has been the best reward,” she said.
Kane and Rachel Desimone, APRN
Support for family members is also very important, and Amy Rohyans-Stewart, Logan Health’s Child Life specialist, has had a profound impact on Kane’s family. When they had feelings of guilt or worry, she encouraged all of them and offered any resources that could help. Shannon recalled her reassurance. “It was very hard being away from my five-year-old daughter Jordan all of the time and explaining to her why I’m at the hospital with her brother. I felt like I was giving only Kane attention and wasn’t being there for Jordan, but Amy reassured me that I was there for both of them,” she said. Amy encouraged them to include Jordan in his care, and Shannon remembers how she immediately bonded with the care team. “When we met Rachel and the team for his first surgery, Jordan said to all of them, ‘You guys are family because you’re taking care of my baby brother,’” Shannon said. “To this day, I view your hospital as our family away from home.”
Surrounded by both his family and his “family away from home,” Kane has been a true inspiration, embodying both resilience and enthusiasm. He is an active child, walking and talking, despite predictions that he might not be able to do so. The optimism of his care team is rooted in Kane’s willingness to keep moving forward, one step at a time. “He’s beaten all the odds,” Shannon said. “He works so hard to accomplish everything.” Not every day feels like a victory, but Kane radiates hope nonetheless. “He wakes up every morning with a smile on his face. It might not end in a smile, but he sure does wake up with a smile on his face, and conquers everything,” Shannon said proudly.
The road ahead for Kane will involve lifelong care from multiple specialists, but he will continue to push past others’ expectations, even with the difficulties caused by his condition. He will also continue to be surrounded by his loving family, community and care team. Shannon is confident that Kane will be okay, and to parents who may be in a similar situation, she recommends they keep their community close. “Never give up and focus on one day at a time. It is okay to ask questions when you don’t understand, and it is okay to ask for help. I thought I had to do it on my own, and it was scary. Now, I realize that I have a huge support system; I just needed to reach out to them.” Her greatest source of strength by far, however, is Kane himself. As she watches him overcome his medical difficulties, she cannot help but embrace his attitude of joy and courage. “At first, my goal was to try and find one positive thing a day that Kane was doing, and now, I can name off a ton of positive things Kane has accomplished. When I think of a hero, I think of Kane, not Spider-Man, because Kane has conquered so much.”