We would like to extend our heartfelt sympathy to Reeanne and Ridge, family and friends, as 21-month-old Greyson passed away on Friday, Sept. 13, 2019, at the Belcourt Hospital in Belcourt, N.D. His life was far too short, but his spirit will be with us forever.
Some people say the hardest thing to do in life is wait…but that’s all Greyson and his family could do.
When 18-month-old Greyson was born, his parents were left waiting for good news. Because the very next day, he was diagnosed with a heart condition that would require surgery before he turned six months old.
Greyson needed tetralogy of Fallot (TOF) repair after being born with multiple heart defects. He suffers from pulmonary valve stenosis—a narrowing of the valve that constricts blood flow to his lungs. He has ventricular septal defect (VSD)—a hole between the left and right ventricles, allowing deoxygenated blood to be mixed with oxygenated blood and circulate the body. He has an overriding aorta—a slight shift causes the aorta to get both oxygenated and deoxygenated blood. Greyson also has right ventricular hypertrophy—his heart is working hard to pump, causing the right ventricle to thicken and the heart to weaken.
Two days after surgery, Greyson fell into cardiac arrest, coded and required CPR (cardiopulmonary resuscitation) and ECMO (extracorporeal membrane oxygenation), which allowed his heart to rest.
That’s when Mayo Clinic placed him on the transplant list for a new heart.
“You need keep moving forward every day,” said Reeanne, his mother. “Live every day the best you can. Greyson has been through so much; we have been through so much.”
Greyson was on the transplant list for 362 days and it was 362 days filled with many ups and downs. Following his initial scare after surgery, his left ventricle was struggling and needed support from a LVAD (left ventricular assist device). Three weeks later, on the day Greyson was supposed to go home, he was intubated once again. Shortly thereafter, he was connected to a Berlin Heart pediatric ventricular assist device.
The Berlin Heart device mechanically supports the heart and enables patients to be more mobile, as it can function without a power source for 30 minutes. ECMO machines, on the other hand, cannot leave their power sources.
Greyson suffered multiple strokes and seizures after transitioning to the Berlin Heart—which is common for his condition—but it drastically improved his quality of life.
“He was sitting up, eating, playing, learning to crawl and stand—he should have been doing these things a long time ago,” Reeanne said. “But the device helped him do it. It was a positive—a lifesaver—for Greyson.”
The expertise of the doctors at Mayo Clinic is why Greyson and his family left their hometown for Rochester. His parents have been very impressed with the care he has received.
“Mayo is wonderful,” said Reeanne. “The doctors and nurses treat Greyson very well and are very kind. They are our family.”
The initial waiting game was when the family first arrived in Rochester. The family didn’t know how long they would be in town, so they didn’t pursue the Ronald McDonald House initially. But when the doctors said Greyson would be inpatient until he received a transplant, they called the House.
And, like so many others, the family was placed on the waiting list.
One week later, Reeanne and Ridge moved into the House; Greyson remained inpatient. Reeanne said staying at the House without their son was an interesting dynamic, as they spent the majority of their time at the hospital. But the House was a place for them to recharge and replenish…before they did it all again the next day.
“The House is a great place and very helpful—a comfortable place to sleep and eat home-cooked meals,” Reeanne said. “Other children and families we have met—we support them and they support us. It’s nice to have that community in this situation.”
The community extends to the volunteers as well, as Reeanne said they are “awesome and kind people.”
And while they were on the waiting list for only one week, Reeanne is very excited about the expansion, which opened in May and increased the number of guest rooms from 42 to 70. It also added much-needed community spaces for children and adults alike.
“The expansion makes us very happy,” Reeanne said. “We have met many families who have been on the waiting list for a long time and some who went home without ever experiencing the House. The House makes every situation easier and now it will do so for many more families.”
Greyson is no longer playing the waiting game; he received a heart transplant this past spring. He still faces a lengthy recovery—it is all dependent on how he responds.
But the most important thing is that his future is bright.
“We don’t have any expectations,” said Reeanne. “We are taking it day by day.”
