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Linsey Rippy was 16 weeks pregnant with her second child when she learned her daughter, Madi, had dilated cardiomyopathy. She was just two-and-a-half years old.
“Our hospital in the Twin Cities ran every genetic test on Madi, but nothing came up,” Linsey said. “She’d had a virus a few weeks before, so they figured that’s what caused her to develop the condition.”
Doctors also figured that meant there was little risk of the baby Linsey was carrying — a girl she and her husband, Noel, would name Sydney — having the same condition. Still, they did a thorough check of Sydney’s heart soon after she was born.
“We got the all-clear,” Linsey says.
Just a few months later, Madi’s condition deteriorated, and the Rippys were told their daughter would need a heart transplant. She was placed on extracorporeal membrane oxygenation (ECMO), which took over the work of her heart and lungs. Then, Madi was transported to Mayo Clinic, where she received a new heart on Aug. 7, 2009.
After Madi recovered, the Rippys returned home and threw themselves into managing the care of a post-transplant patient. Life seemed to be settling into a new normal. Then, when Sydney was two-and-a-half, she too was diagnosed with dilated cardiomyopathy.
“I ran out of the exam room and into the bathroom and laid on the floor and cried,” Linsey says.
She didn’t stay there for long. In the years since, Linsey has become a fierce advocate for her daughters. She’s devoted herself to giving back — through toy drives, blood drives and other generous acts — for the gifts of life that keep her daughters alive. And she’s committed to celebrating every milestone that Madi and Sydney notch. One of the most recent was the 10-year anniversary of Sydney’s transplant, a marker that gave Linsey time to reflect on how far her youngest daughter has come.
Sydney was listed for transplant on April 22, 2012.
Though Madi had waited less than 24 hours to be matched with a heart, the Rippys were told that was highly unusual and they should be prepared for a longer wait for Sydney — perhaps as long as six to 12 months. That’s when Linsey decided to try calling in a favor.
“My great grandma’s birthday was April 24,” Linsey says. “I said that if Grandma Lou has any power, Syd will get her heart on Grandma’s birthday. We got a call on the 24th that a heart was available. Syd had her transplant the next day.”
In the 10 years since then, Syd has become a familiar face at Mayo Clinic. Both she and Madi have multiple medical issues related to transplantation and the challenges they faced leading up to their life-saving surgeries, including developmental delays. That means lots of doctor’s appointments. And for most of them, the Rippys make the journey to Mayo Clinic.
“It’s 95 miles each way for us, and people ask us why we don’t transfer the girls’ care to the Twin Cities,” Linsey says.
There are many, many reasons, she says.
“We’ve had great care other places, but Mayo is a whole different level,” Linsey says. “I have never seen a facility that works so well. Everything is well coordinated. When the girls have a test, we get the results the same day. I talk to other transplant parents and they wait days or weeks for test results.”
There’s also a matter of trust, something essential when your children’s lives are in the hands of others.
“When we were first at Mayo, I didn’t leave the room,” Linsey says. “But I soon realized that I was okay going to get lunch or take a break. The staff treated my kids like their kids.”
Sydney and Madi would agree.
“When I tell the girls we’re going to Mayo, they get excited,” Linsey says. “They love all the people there. The staff spoils them. My kids aren’t mentally where other 13- or 16-year-olds are, but their doctors ask them questions and explain to them what’s happening in their bodies. The people at Mayo are just phenomenal, phenomenal people.”
That includes the girls’ cardiologist, Jonathan Johnson, M.D., (“Madi’s a little bit in love with him.”) and transplant surgeon, Joseph Dearani, M.D. (“He’s their superman.”)
“We’ve never felt rushed or stupid or like a number at Mayo,” Linsey says. “Whenever I have a question, I send a note through the portal and someone gets back to me right away. The team is literally always there for us. That takes a lot of burden off me.”
That team has expanded over the years to include researchers looking for a genetic answer to why both Madi and Sydney developed aggressive dilated cardiomyopathy at such a young age.
“It took them five years, but they found a new mutation,” Linsey says. “It’s technically not confirmed because our girls are the only two they know who have it. My kids are a Mayo-documented rarity.”
At home, those rarities are just two girls who love coloring and reading (Madi) and one-liners and Finding Nemo (Sydney). They don’t seem to recognize that they’re miracles.
“We celebrated Syd’s transplant anniversary, but I’m not sure she gets what it’s all about,” Linsey says.
She and Noel do.
“Our girls have issues, but they are running around and enjoying life,” Linsey says. “A lot of kids who need a heart transplant die waiting. We feel very blessed.”
For a long time, Linsey also felt guilty. She wondered if wanting hearts for her children meant that she was wishing for someone else’s children to die. Then someone helped her reframe the situation.
“Someone told me that what we’re hoping for is not that a child dies, but that if they do, that their parent or guardian says ‘yes’ to donation,” she says. “That freed me from my guilt.”
It has not made her any less grateful for the incredible gift of donation. Which is why she organizes blood drives or toy drives during holidays, her girls’ birthdays, and their transplant anniversaries. She knows what it is like to need – whether it’s a toy to distract a hurting child or a heart to keep a child alive. She wants to help meet the needs of others any chance she can.
“We are super grateful for what we’ve received, and we want to honor our donors for what they’ve given us,” she says. “This is one way we do it.”
Editor’s note: If you’d like to support the Rippy’s toy drive, you can shop their Amazon wish list. All donations go to Mayo Clinic or Ronald Mc Donald House in Rochester.
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