A perfect heart, a lasting legacy: Kelly McGeough Foundation helps 5-year-old Rinken Johnson beat heart defects

BROOKINGS — Take a moment to find a quiet place. Hold your hand over the left side of your chest and just listen to it — really listen to it: your heartbeat. Cherish it, because it’s not a given for everyone, including 5-year-old Rinken Johnson.

The daughter of Brookings resident Emily Johnson, Rinken was just 3 days old when she had her first heart procedure — a catheterization — followed a few days later by open-heart surgery in Omaha, Nebraska. And, at age 16 months, Rinken received a heart transplant in Minneapolis.

It was an ordeal, but Johnson wasn’t alone in her fight. At her side the entire time was the Kelly McGeough Foundation.

“They were our lifesaver — they helped us through it,” she said.

The foundation was established May 1, 1983, and takes its name from the son of Bill and Sandra McGeough, 10-year-old Kelly, who died Jan. 4, 1983, following a battle with leukemia. Kelly loved Matchbox cars and wanted to be an ambulance driver when he grew up.

His legacy lives through the hundreds of Brookings County children and their families that the foundation has helped over more than 40 years.

“Honored. Blessed. It’s hard to put into words what they’ve done for our family. We didn’t have to worry. They took that worry away from us,” Johnson said tearfully. “To be chosen, and to be accepted by them, is something that we can’t thank them enough for.”

With Rinken’s trials, every little bit counts. Johnson said the foundation stepped up to the plate, covering the cost of everything from meals to gasoline to groceries.

“We do our best and stretch our money,” Sandra McGeough said. “We just are so honored to be able to help them.”

Difficult news

Johnson, who was told she could never have children, found out when she was 22 weeks pregnant that Rinken had a heart defect known as Left Heart Syndrome. Basically, it meant the left side of her heart wasn’t developing.

Rinken was born in Omaha on Oct. 19, 2020 — a month and three days before her expected due date. She weighed 6 pounds and 2 ounces.

“They took her right from me — I got to hold her for 30 seconds,” Johnson said.

The procedures prior to Rinken’s heart transplant aimed to reconstruct her heart, allowing the right ventricle to pump oxygen-rich blood to the entire body and the blue blood directly to the lungs. They’re known as the Norwood, Glenn, and Fontan procedures; Rinken underwent the first two.

“They did the Norwood, and it was successful. She came back to the room with an open chest,” Johnson said. “She was open-chested for three days — we could literally watch her heart beat, which I thought was pretty cool, but my mom didn’t so much like it.”

They were in the hospital for just over a month and were able to go home for Thanksgiving. Some months later, Rinken had the Glenn portion of the treatment.

“In between that, she was in and out of the hospital 90% of the time, just sick,” Johnson said.

It was later discovered that Rinken had something called Specific Antibody Deficiency, which is a condition where, according to the Immune Deficiency Foundation, people have normal levels of antibodies but cannot produce antibodies to specific types of microorganisms that cause respiratory infections.

New heart needed

Time passed, and everything seemed well enough with Rinken’s heart. That changed in January 2022, following the family’s return from visiting Johnson’s grandfather in California.

“They did an echocardiogram (and) everything was fine,” Johnson said of the 10 a.m. appointment on Jan. 3. “By 4 p.m. that afternoon she was in complete heart failure. That’s how fast it went.”

Rinken was taken from the clinic in Brookings to the emergency room at Brookings Health System. From there she was flown to Sioux Falls — with all this occurring on Jan. 3 — where they stayed until Jan. 6, 2022, when Rinken was transferred to Omaha. Medication and bloodwork followed over the ensuing days and weeks.

On Feb. 9, 2022, she was placed on the heart transplant list at the tender age of 16 months.

“You can imagine how hard it is to get a teeny-tiny heart,” Johnson said. “The wait. We just had to wait. We were told that 58 days is usually how long you wait for a transplant. Well, that number came and went.”

On April 9, 2022, Johnson was in Rinken’s room talking with her mother on the phone when the hospital’s transplant team entered.

“I was like, ‘Oh my God, we’re going to get a heart!’” Johnson recalled.

Turns out, that wasn’t the case. Instead, Johnson learned that the head of the transplant department — one of Rinken’s strongest allies — was no longer with the hospital. As such, Johnson had to decide what to do going forward. After talking with the physician who did Rinken’s heart catheterizations, Johnson opted to move Rinken to Children’s Minnesota in Minneapolis.

Renewal, connections

On April 19, 2022, Rinken was flown to Minneapolis — and, according to Johnson, it was the best decision she ever made.

“We met some really good family friends of ours now,” Johnson said. “Rinken and their little daughter also needed a heart at the same time. They were called the ‘Heart Sisters’ because they were together all the time — and there’s actually a documentary out on them for their heart transplant journey, which is really cool.”

Information on the documentary can be found at https://filmfreeway.com/HeartSistersDocumentary.

The other girl’s name is Madison, and her family lives in Minnesota.

“We talk to the family all the time. They literally are inseparable — they call each other on the phone,” Johnson said.

Madison got her heart first. Rinken’s blessing came two weeks later, at 1:30 p.m. on Aug. 29, 2022, with a phone call from the doctor, Holly.

Johnson paused, her eyes glistening at the memory of what the doctor said: “We have a heart, and it’s absolutely perfect for her.”

Johnson packed their bags and the next afternoon, at 4:30 p.m. on Aug. 30, 2022, the team took Rinken in for surgery. It wasn’t until 4 a.m. the next morning, Aug. 31, that Johnson saw her daughter again.

“It was a long 12 hours, but I felt at peace the whole entire time,” Johnson said, adding that a member of the medical team kept her updated throughout the procedure. “The second time that she came in, she said, ‘They’re just taking out the heart now.’ The third time that she came in, she said, ‘It’s beating,’ and showed me a copy of an EKG — it was blank, and then it showed her first heartbeats on it.”

Following the surgery, Rinken had some setbacks — “it just was a rough couple days” — because of scar tissue from previous surgeries and reactions to medication.

She pulled through, though, and the healing process began. On Oct. 7, 2022, they were discharged to the Ronald McDonald House in Minneapolis — and on Oct. 31, 2022, they finally got to come home to Brookings.

“I will never forget that because she left the hospital in a ‘Beauty and the Beast’ Belle costume, and she was Cinderella that night for trick-or-treating,” Johnson said.

In all, mother and daughter were away from Brookings for 10 months.

‘Very touching’

Johnson connected with the Kelly McGeough Foundation in July 2020 through word of mouth. Katey VanderWal, whose daughter had heart issues at birth and who had also been assisted by the foundation, helped link Johnson.

Johnson filled out an application, and shortly thereafter received a call letting her know the foundation would love to help.

“I’d never heard of (the foundation) before, and now I hear it all the time — all the time — which is fun, too,” Johnson said.

She added, “Just how they cared and how members checked in on us. It was like we were part of their family, part of their daily lives, and they didn’t even know us. It was very touching.”

McGeough recalled the time she first met Johnson and Rinken. It was at an event at Cubby’s Sports Bar & Grill in downtown Brookings.

“Emily said, ‘Show Sandra your special cross.’”

It was the mark left by Rinken’s heart surgeries. Speaking to her daughter, Johnson asked, “What does that mean? Does that mean you’re a strong, little girl — and that you have a special heart?”

McGeough has held that memory close. “I have that picture; it means so much to me. That was pretty special for this lady.”

‘Absolutely astounding’

The memory is among many she has from the decades dedicated to the foundation’s success — success that arose out of the grief of losing a son, alongside the love the Brookings community has for its families and children and the dedication of the foundation’s board.

“It is absolutely astounding to me when we look back,” McGeough said. “My husband is the one who started the foundation because we had two little children at home and I was teaching kindergarten full time and I was spent.”

She said Bill McGeough had a men’s store in the University Mall. Three groups — the Downtown Merchants Association, the Brookings Mall Association and the University Mall Association — came together and asked him if they could raise funds for Kelly’s bone marrow transplant.

“When we didn’t need the bone marrow transplant, there was $24,000,” Sandra McGeough recalled. “But it wasn’t our money. It was community money, Bill felt.”

The end result was the establishment of a 501(c)(3) organization — the Kelly McGeough Foundation.

“It just — people remembered, and then we would help children,” Sandra McGeough said. “It isn’t us; it’s the community of Brookings. I can’t stress that enough. People in Brookings care, and they especially care about kids — and they care about young families.”

She also spoke to the experience of the foundation’s 15-member board, whose members include medical and business professionals, along with educators.

“Our board is very seasoned. Our board has been with us, many of them, for 20 to 25 years. It’s just amazing how long they’ve been with us,” Sandra McGeough said. “But, yes, we’ve brought younger people who are interested in our foundation. It’s so good to have a combination of seasoned and young people because they’re the ones that know about the Facebook and the technology.”

She also addressed needs and the future.

“We never know what the next need will be, and so you can’t budget for a need that you don’t know about,” Sandra McGeough said. “So, you just keep moving forward and continuing to fundraise, continuing to be grateful, continuing to look for ideas — how we can expand, are we doing enough to get it out to the public because now it’s a new generation who haven’t heard of Kelly, who haven’t heard of the foundation.”

She finished, “We always keep our ears to the community so that we know who might need us next. We try to help people from all different walks of life.”

Special meeting

Johnson and Rinken experienced a special moment last year when, on Palm Sunday in Sioux City, Iowa, they met the family of the 2-year-old girl whose heart now beats within Rinken’s chest.

“On our way down there, where did we stop? What did we make?” Johnson asked Rinken. “We went to Build-A-Bear, and we made twin bears, didn’t we?”

“Yeah, for the donor family,” Rinken said.

“And what was special about their teddy bear?”

“It had my heartbeat.”

Johnson sniffled. “We recorded her heartbeat, and we put it in the bear, and we gave him a stethoscope in the bear, didn’t we?”

“Yeah, and I got that cat.”

“He gave you one of her favorite stuffed toys, didn’t he?”

“Yeah.”

The “he” is the father of twin girls, one of whom drowned. Now, with the teddy bear in hand, he and his loved ones can listen to their daughter’s heart as it beats and beats and beats, giving life to another little girl, Rinken, who’ll be a kindergartener at Hillcrest Elementary School this fall.

“Our relationship with that family is very special, very special,” Johnson said.

— Contact Mondell Keck at [email protected].