Waiting for a new heart can strain others’

At Fairview-University Medical Center, five families are currently waiting for a transplant.

Emily Kaiser

When waiting for a heart transplant for your child, you take things day by day, said Rich Bergland, of Montgomery, Minn.

And Feb. 19, he received the call for which he had been waiting 235 days.

The transplant team had finally found a heart for his 15-year-old son, Nick Bergland.

Every family waiting for a heart transplant goes on its own emotional journey that involves a tremendous amount of patience, in which time can often become a parent’s worst enemy.

At Fairview-University Medical Center, five families are currently waiting for a transplant and going through this extreme emotional struggle every day. The hospital performs approximately five to seven pediatric heart transplants each year.

For Nick, the wait for a new heart kept him in a hospital bed for nearly eight months and included an evening of false hope that sent his relief into a tailspin.

On Dec. 31, Nick’s family received a call that a heart was available, and Nick was rushed into intensive care to prepare for the operation.

The heart, however, which was set to arrive from Texas, never made the trip. The airplane, en route to retrieve the

organs, experienced a landing-gear malfunction and crashed in Texas. Because of weather-related problems, that team was unable to get another plane into the air on time.

“Nick took it pretty hard,” Rich said.

Nick was so upset the doctors broke policy and let him spend the night in his own hospital room instead of the Intensive Care Unit.

But 11 days ago, Nick finally received a new heart and is now recovering at Fairview.

As of Wednesday afternoon, Nick was slowly waking up after more than a week of being heavily sedated. Doctors hope to remove the breathing tube this weekend, said Cynthia Herrington, Nick’s pediatric cardiovascular and thoracic surgeon.

Nick’s lengthy surgery routine with Herrington was nothing new for the Berglands. The transplant, which was performed during the early morning hours of Feb. 20, was one of seven major surgeries Nick has been through.

He was born with a heart defect known as complex congenital heart disease, Herrington said. Nick was born without a pulmonary artery and only one pumping heart chamber instead of two, she said. He is also autistic.

At 6 days old, Nick was brought into surgery and began a lifelong health battle that has plagued him to this day.

By June, Nick’s family and physicians lost all control. His body’s sodium levels had dropped, and his health began to rapidly deteriorate.

“He was delirious,” Rich said. “He was hearing voices.”

“A different kind of wait”

It was then that doctors recommended Nick to the heart transplant list. By July 28, he was accepted onto the list and began the six-month wait.

“That wait is the absolute worst,” Rich said. “You are waiting to know if your child is going to get the chance to survive.

“You then start a different kind of wait. It’s not if, but when.”

Eight-year-old Racheal Larkins, of St. John, N.D., another recent Fairview transplant patient, had a much shorter hospital stay.

In Racheal’s case, she received a new heart after only one month on the list, said Terri Crissler, Racheal’s mother.

“They told us it might be a year or two years before we would get the transplant,” she said.

Terri said Racheal’s case was unusual, but she is thankful for her daughter’s good fortune.

“It would be nice if all of the kids could be this way,” she said.

By contrast, Nick’s transplant experience was measured in months, not weeks. His dimly lit, cramped hospital room became his new home away from home.

Before surgery, his walls were covered in well-wishes from family and friends. Several autographed posters were spread throughout the room, showing off autographs from the band Barenaked Ladies and Gophers athletes who had come to visit. The cupboards were full of videogames.

Rich visited his son daily.

“I would stay until Nick told me he had enough of me,” he said.

Nick seemed most excited when grade school friends visited him for a couple hours to play the latest video games, Rich said.

For Nick, the daily pressures of waiting were rarely relieved, but he was given permission to leave the hospital for the afternoon to celebrate his 15th birthday Feb. 6.

Nick spent that afternoon at the Ronald McDonald House on Oak Street Southeast with his family, enjoying the comforts of his father’s room. Rich lived in the house during his son’s hospital stay.

“His one request was to lie in the queen-size bed and watch Nickelodeon,” Rich said.

Nick spent the evening sprawled out on the bed, watching TV and opening presents his family had brought.

Parents of children awaiting transplants are faced with their own set of unique challenges, Rich said.

Nick’s mother, Dawn Bergland, took the responsibility of watching over the house while her son was in the hospital. She has not been to see Nick since his surgery but said she plans to visit once he is conscious and breathing on his own.

“It is easier being home for me, because I can’t handle seeing him like that and then not being able to do anything about it,” she said. “I sit at home and pray; that’s how I meditate.

“I have more things to keep my hands and mind going instead of sitting in a waiting room.”

An hour away from home, Rich stays at the Ronald McDonald House. The hospital walls often feel like they are caving in, but there are many people who keep him sane, he said.

The gestures from the hospital’s valets, cafeteria workers and gift shop employees mean the most, he said.

“A lot of people have made the time to sit here and wait all the more bearable,” he said. “They really have made a big difference in making this all tolerable.”

The road to recovery

For other families at Fairview-University Medical Center, the recovering is beginning outside the hospital doors.

Nathan Johnson, a 3-year-old from Perham, Minn., waited 18 months before receiving a new heart Jan. 10. He is now spending his first week out of the hospital at the Ronald McDonald House.

Nathan’s wait lasted much longer than Nick’s or Racheal’s, but his family was able to cope because of his unusually healthy demeanor, said his mother, Pam Johnson.

While staying in the hospital, Nathan was as active as any 3-year-old could be, given the restrictions of the 15-pound IV backpack he carried, Pam said.

Nathan was diagnosed with restrictive cardiomyopathy, in which the heart cannot relax normally during the time between heartbeats. The only treatment was a heart transplant, Pam said.

During Nathan’s stay, his parents took turns staying with him, while the other cared for their 1-year-old daughter.

“You kind of get tunnel vision, and you just know this is what you need to do,” Pam said. “Everything you thought was a priority isn’t anymore, and your number one priority is taking care of him.”

The experience brought on a slew of unexpected emotions, Pam said, but the good outweighs the bad.

“This is a journey I never would have chosen, but we’ve learned a lot about how important family is,” she said. “We’ve learned things about ourselves and how important it is to stick together.”

Nathan has been returning to the active 3-year-old he was before the surgery while taking medications routinely throughout the day. He will be taking many of the medications for the rest of his life.

Watching a child return to good health from near death is an extremely rewarding experience for a transplant surgeon, Herrington said.

“If you have a child like Nick, he’s been sick every day of his life,” she said. “Now, I will be able to watch him go home and be healthy for the first time.”

As Nick continues to fight for recovery at the hospital, Rich said he gains hope from success stories such as Nathan’s.

Twenty percent of children in Nick’s condition survive after surgery, Rich said.

“Nick is going to be one of the 20 percent that make it,” Rich said.

Rich said he is set to wait as long as it takes for Nick to get healthy.

“He had no chance before. Now, he has a chance, and from my seat, that’s everything in the world,” Rich said. “It doesn’t get any easier or any better, but hey, he’s got his chance, and it’s just waiting for him to do what he’s going to do.”

– Freelance editor Steven Snyder welcomes comments at [email protected]