Park Rapids boy living with failing heart as family waits for transplant call
Gannon Wilkins is at the top of the list for a heart transplant and until that call comes his family feels blessed the 8-year-old Park Rapids boy is able to spend this time at home, not in a hospital bed. The pump Gannon carries with him at all t...
Gannon Wilkins is at the top of the list for a heart transplant and until that call comes his family feels blessed the 8-year-old Park Rapids boy is able to spend this time at home, not in a hospital bed. The pump Gannon carries with him at all times, 24 hours a day, administers medication to keep his heart pumping. This medication pump allows Gannon to live at home, go to school and be as active as his body permits. It also allows the Wilkins family some normalcy in an extremely abnormal and scary situation. It’s been a long journey for the family since doctors first discovered something wrong during Amanda’s pregnancy with Gannon. The family has endured countless hospital stays, tests and frightening uncertainty since.
As the family waits for a donor heart for Gannon, Amanda says they try to enjoy every day and not think too much about what may happen with or without a heart transplant. “It feels like a blessing and a miracle he’s even here,” Amanda said. “We’ve always known from day one every day is a blessing with Gannon.” Gannon was born with Long QT Syndrome, a heart rhythm condition that causes fast, chaotic heartbeats. Doctors also suspect he has a rare condition characterized by an abnormal heart rhythm (arrhythmia). Doctors discovered the genetic anomaly during the sixth month of Amanda’s pregnancy with Gannon while the family was living in New Mexico. Her husband Bobby was stationed there with the United States Air Force.
An ultrasound showed the baby’s heart rate measuring over 400 beats a minute. The baby had severe hydrops, a serious fetal condition where the body fills with a layer of fluid causing congestive heart failure. Doctors gave Amanda the antiarrhythmics medication Flecainide to slow the heart rate. Amanda and the baby were monitored throughout the pregnancy and about six weeks before Gannon was born Amanda said the heart rate looked fine. The hydrops was resolved and doctors stopped the medication but the heart condition returned. That’s when the doctors realized this was something Gannon would be born with. He was delivered three weeks early and spent close to a month in the NICU to regulate his medications.
Gannon is at the top of the transplant list for his size and age at Mayo Clinic in Rochester after going into cardiac arrest in July. He doesn’t like to talk about all the medical procedures he’s been through and shies away from conversation about his heart. Gannon’s heart functions at 15-20 percent. The medications now administered through his PICC line help his heart pump efficiently. Gannon continues with routine trips to Mayo for tests and consultations. Amanda said the doctors have been amazing through the entire journey from New Mexico to Denver and now Minnesota. “They keep him healthy and not panic us. We have the absolutely top doctors in the country,” Amanda said. “They all know Gannon by first name.” When Gannon was 3 ½ years old doctors in Denver, Colorado wanted to try a cardiac ablation, which is a medical procedure that attempts to fix the troublesome area in the heart that is causing the heart to beat too fast. But Gannon’s heart wasn’t big enough for surgery. Medications to regulate his heart rate continued until he was 5 when doctors discovered new arrhythmias in Gannon’s heart. Doctors then had to wean Gannon off meds to now do the ablation. Once back on the meds doctors discovered they no longer worked. Doctors then had to look for another medication combination.
“While in the room with the doctor Gannon got a scared look on his face, his heart rate sped up and he went into ventricular tachydardia,” Amanda recalled. “They called a code blue and had the crash cart come in and were standing over Gannon waiting to shock him.” The IV meds worked to settle his heart rate down.
Bobby requested a transfer from New Mexico and the family moved to Aurora, Colorado for continued care at a children’s hospital. In 2012 doctors decided to place an Implantable Cardiac Defibrillator (ICD) to regulate the arrythmias. “We got home and everything was going okay,” Amanda said of Gannon, who then was one month shy of his fifth birthday. “Dad and I were downstairs, Gannon was upstairs playing and we heard a blood curdling scream.” Gannon was crying at the top of the stairs. “My husband scooped him up and asked Gannon what was wrong when his whole body jumped and brought my husband to his knees.” Gannon’s ICD was discharging and they called an ambulance. “The ICD discharged 14 times in an hour,” Amanda said. “It did its job but the heart wasn’t cooperating with the defibrillator.”
Doctors in Denver consulted with experts at Mayo Clinic to discuss his case. Bobby retired from the Air Force after a 23-year career and the family moved to Park Rapids in November of last year to be closer to Mayo for Gannon’s continued care. Amanda grew up in Park Rapids and living here provides additional support from family and friends. Amanda said the ICD hasn’t discharged since 2012.
The meds continued to work up to about December of last year when doctors noticed Gannon’s heart function had decreased from 60 percent to 46 percent. They continued with further medical evaluations. While waiting to return to Mayo to see Gannon’s electrophysiologist his heart function dropped to 25 percent. Doctors tried new medications to figure out a solution. Weaning Gannon off one med and trying a different one was hard on his heart and in July of this year he went into cardiac arrest at the hospital. Doctors performed CPR and administered emergency medications to get his heart beating normally. An echocardiogram showed his heart function had dropped to 10 percent. At this point the decrease in the heart’s ability to pump moved Gannon the heart transplant list.
The Wilkins family waits as Gannon goes about his life as an 8-year-old boy. He’s a 3rd-grader at Century Elementary. He’s active with limitations, a funny kid who enjoys playing Lego’s, soccer and carpet hockey with older brother Kiergon. He also likes to make crafts and create artwork with his grandmother. Daily activity wears Gannon out but Amanda says it’s worth having her son home with the family and attending school in Park Rapids. “When he gets home from school he’s exhausted. It definitely takes everything out of him,” Amanda said. “We have no worries or reservations about sending him to school. We know they take excellent care of him.” He’s able to attend school because the medication pump he carries gives his heart the ability to function the best it can until the transplant.
“Transplant is the next step. This has to get done,” Amanda said. “I’ve got my phone and it could be any time we get the call.” She tries not to look too far ahead though, instead enjoying the daily routine with Gannon. “The anticipation was very high when he first came home in July. Now, physically and emotionally it can get exhausting,” Amanda said. “We’re in our routine at home. You just can’t think about it, you’d drive yourself crazy. It’s nice to be home. The calmness we have here is greatly appreciated.”
“There’s no way of really preparing for anything,” Bobby added. “We go day by day and see how things pan out.”
The transplant team is in place and ready when the donor heart becomes available. Once the call comes Gannon will fly to Mayo for the transplant surgery. The surgery is expected to take 4-6 hours with inpatient recovery about two weeks. Once discharged, Gannon will have to stay in Rochester for three months.