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Sharing Mayo Clinic: A shared heart: Two families come together after tragedy, transplant
Around the 15th of every month, Christin Gigstad and Tina Haug think of each other. They pick up their phones and text. Even if they've already talked that week, they want to check in.
It's an important date for them, one that no one else can fully understand.
Four years ago, Christin and Tina were strangers. Their lives were brought together by crisis. And now they like to say they have a shared heart, thanks to a team of quick-thinking doctors and one amazing gift.
From vacation to the emergency room
In July 2017, Christin and her family were on vacation in central Minnesota. Her son, Carson, said he felt sick. The normally energetic 13-year-old was exhausted, and he had stomach pain and a headache.
They went to a local emergency room, where a doctor delivered a shocking diagnosis: Carson was in heart failure.
Before the Gigstad family could process the news, Carson was airlifted to another hospital before transferring to Mayo Clinic in Rochester.
"I had a million questions," says Christin. "Many people know years ahead of time that something like this could happen. We didn't."
At Mayo, they began to get some answers.
"Carson's case was as urgent as you get," recalls John Stulak, M.D., a cardiovascular surgeon on Carson's care team at Mayo Clinic. "For a young child, transplant was clearly the best option. But he was way too sick to think about waiting for a new heart."
The care team decided to do surgery to implant a mechanical pump called a left ventricular assist device, or LVAD. It would help Carson's heart pump blood. It could also help preserve his kidneys, lungs, and liver.
At the time, Carson was the youngest patient to receive an LVAD device at Mayo. Despite the unknowns, the surgery went very well.
"Sometimes even with being very sick, youth on your side is a powerful companion," says Dr. Stulak.
Helped by a tragedy 300 miles away
The same night as Carson's surgery, Tina Haug was awoken at 12:30 a.m. with terrible news: Her 33-year-old daughter, Amanda, had been in a car accident.
Despite the best efforts of paramedics and doctors at their local hospital in South Dakota, Amanda's life couldn't be saved.
"The doctors came to us and said there was nothing more they could do," recalls Tina. "And then they told us Amanda's ID card said she wanted to be an organ donor. They asked us what our thoughts were."
In the face of their unfathomable loss, Tina and her husband looked at one another and said, "Yes."
Amanda was someone who "always wanted to help others," says Tina. From a young age, she called everyone "friend," even if she'd just met them. After high school, she got a custodial job at an assisted care facility, where she was known for — and often reprimanded for — stopping to visit with the elderly residents.
"Donating her organs would have been what she wanted," says Tina. "We just knew it was right for her."
The hospital contacted LifeSource, the organization that serves as a bridge between organ donors, their families and recipients. More than 3,000 people are on the transplant waiting list in the upper Midwest region that LifeSource serves.
It didn't take long before all of Amanda's organs were helping people on that list.
Waking up with a new heart
"The heart is an amazing organ," says Dr. Stulak. "It remodels itself to preserve its function. It will dilate or increase muscle to stay alive. Patients with heart failure hit a point where the heart has reached its peak."
When Carson Gigstad came to Mayo, his heart had compensated so long it finally couldn't keep up anymore.
"Donating her organs would have been what she wanted. We just knew it was right for her."
Tina Haug
Doctors planned on waking him up from his LVAD surgery three days after he went under, which is a common recovery practice. But then they learned a heart — Amanda's heart — had become available.
"We heard the helicopter," Christin recalls. "The nurses said, 'His heart has arrived. Go get some breakfast.'"
Early in the morning of July 18, Carson had his transplant. The surgery was a success — a "perfect match," the doctors said. A few days earlier, Carson had gone to sleep a very sick teen. Now, thanks to Amanda, he woke up with a new chance at life.
Coming together in tragedy
Although donor and recipient families don't always connect, Christin and Tina both wanted to reach out to the only other person who would understand what they'd been through. Social workers and LifeSource representatives facilitated the first contact.
Tina sat down to write a letter about Amanda. It wasn't easy. "How do you sum up your daughter of 33 years in a few paragraphs?"
When Christin responded, describing the success of Carson's surgery, it was the first of what would become a string of coincidences. Tina received the letter on Nov. 4 — Amanda's birthday.
Christin and Tina started emailing and talking on the phone for hours at a time. They decided to meet the following spring in Minneapolis.
On the drive there, Tina told her husband she wanted to get Christin a gift. They stopped and bought a plant. When they arrived, Christin was waiting — with a plant for Tina.
"We knew right then that this was meant to be," says Tina.
A hidden blessing
Carson Gigstad's diagnosis with heart failure unexpectedly saved another life. The day after his transplant, Mayo doctors urged his parents and sister to get echocardiograms to check for underlying heart conditions.
Genetics plays a big role in heart disease, explains Dr. Stulak. "You can be a marathon-running vegetarian and drop dead without knowing something was brewing underneath. You can change a lot of things, but not who your parents are."
The family received their second piece of shocking news in a week: Carson's father, Paul, was also in heart failure. Christin recalls the doctors telling her it was so advanced, he may have only survived for six more months untreated.
"I used to grumble at giving a family health history," says Christin. "But it can save your life."
A new family
The Gigstads of 2021 are a different family than the one that set out for summer vacation in 2017. Even their house looks different. To protect Carson's vulnerable immune system, they ripped out carpeting and replaced bedding and toys as soon as they returned from Mayo.
They return to Rochester for frequent check-ups for both Carson and Paul. For the rest of his life, Carson will have to manage lifestyle changes and ongoing medication.
With these changes came plenty of grief — and some silver linings.
"Each day is a milestone. Every birthday. We've had another four years that we wouldn't have had, had he not received this gift."
Christin Gigstad
Christin learned self-care from the nurses at Mayo and now teaches it to friends and family. Inspired by her brother’s journey, Carson's sister Delaney is studying to become a nurse. Carson, now a high-school senior, was motivated by his health challenges to create accessible picnic tables for other students with disabilities. Like Amanda, who gave him the gift of life, he is motivated to help others.
Their experience brought them even closer as a family.
"Every day matters," says Christin. "And the things that used to upset us, in the grand scheme of things, don't as much anymore."
The gift that keeps giving
Carson isn't the only person whose life was touched by Amanda's decision to donate.
In 2019, Tina received a letter from LifeSource. Between organs, tissue and muscle, her daughter Amanda's gifts had helped 85 families in the United States and Canada.
"To me, she's still doing what she was doing on earth," says Tina. "Still friends with everybody. Still wanting to help."
Amanda's choice to donate has also helped her own family work through their grief. Her daughters, who were 6 and 8 at the time of her death, can listen to their mother's heart through a recording sewn in teddy bears — a gift from Christin.
Tina also takes comfort in the thought that her daughter lives on. "I know Amanda's going to graduate again this year," she says. "She's going to go to another prom. She can enjoy these things the second time around, and Christin shares it all with me."
As Carson grows older, a few of his personality traits and preferences — like a new stubbornness and a sudden love of music — look amusingly familiar to Tina.
Though it's not backed by scientific research, many transplant recipients report taking on some of the traits of their donors, explains Dr. Stulak. Many believe it's just a coincidence. But not everyone.
"There are enough instances of this occurring after a transplant that coincidence becomes less likely," says Dr. Stulak. "Not everything we do is science."
Finding beauty in tragedy
On the surface, Carson is a typical 18-year-old. He loves trap shooting and working with his hands. Despite the changes his transplant brought to his life, he doesn't think of it as a big deal.
But for his mother, "Each day is a milestone," she says. "Every birthday. We've had another four years that we wouldn't have had, had he not received this gift."
Their experience was traumatic, but Christin is also quick to use another word: "Beautiful."
"The hospital is not just people coming in, being sick or dying. There's magic happening here, too."
John Stulak, M.D.
She recalls the morning of Carson's transplant. She and her husband went to a local restaurant in Rochester for breakfast.
"The waitress came up and said, 'Can I help you?' And I just said, 'My son's getting a new heart right now.' The waitress started crying. She brought back a bag of brownies, cookies and cakes for Carson's health care team," Christin says.
That's just one example, she says, of the ways her family felt supported by the entire Mayo community during their ordeal.
"It's an experience we'll never forget," she says. "To this day, we're like family at Mayo."
"The hospital is not just people coming in, being sick or dying," says Dr. Stulak. "There's magic happening here, too."
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This story originally appeared on the "In the Loop" blog