Small But Mighty: Paisley’s Brave Journey Inspires Support for Children’s Heart Care

When Tiffany and Ryan Long welcomed their first child into the world, they had no idea that the journey they were about to embark on would require a huge amount of strength and resilience — for them and for their tiny baby girl.

Paisley was born with the most severe form of scimitar syndrome (a rare congenital heart defect), along with pulmonary hypertension and a host of life-threatening complications. Just moments after her birth, the Longs watched as their newborn daughter stopped crying and turned purple. A team of doctors rushed her to the neonatal intensive care unit. What followed was a whirlwind of tests, life-saving procedures, and the heartache of learning that Paisley had a diagnosis so rare and complex few had seen a case like hers. 

“We were so lost and confused,” Tiffany recalls. “We didn’t even really understand the severity at first.” 

Congenital heart defects impact blood flow and are the most common birth defects, affecting one in 110 children in the U.S. One in four children with a heart defect will need surgery or other major medical procedures within the first year of life. 

The Fight for Every Breath

The first year of Paisley’s life was almost entirely spent at University of Michigan Health C.S. Mott Children’s Hospital. Tiffany left her job to be at Paisley’s bedside every moment, while Ryan balanced work and hospital life. Each time Paisley was discharged, it was only a matter of days before the family had to call 911 and rush back — sometimes Tiffany administering life-support while waiting for help.

“We’d go home for a day and be back the next by ambulance,” says Tiffany. “It was terrifying. They told us the only way to bring her home was a tracheostomy and ventilator. It was the hardest decision. But looking back, it was the best we ever made.”

After more than 40 surgeries and two cardiac arrests, Paisley is living proof that strength comes in all sizes. She’s the inspiration for this year’s Save A Heart campaign, an effort by Mott to increase awareness and raise funds that support research, develop innovative therapies, and provide family support services. 

A Zest for Life

On good days, Paisley is a joyful, playful seven-year-old. She bops around to the Jonas Brothers or Taylor Swift, makes imaginary calls on her toy phone, and plays with her two brothers. She enjoys kindergarten as much as her health allows and even attended a Make-A-Wish trip to Disney, where she had the best time ever.

“She’s the happiest, most easygoing kid you’ll meet,” Tiffany says. “She does everything to the fullest, and she makes life happy for everyone around her — even when she’s going through the hardest things.”

Ryan adds, “You never know how strong you are until being strong is the only option you have. Paisley is the one who taught us that. She pushes on and stays hopeful. She’s the reason we do too.”

But behind Paisley’s radiant smile is a reality that many cannot see. “Her illness isn't on the outside,” Tiffany shares. “Her disabilities are invisible, and that can be hard for people to understand when they see her looking like any other kid.”

The Need for Research (and Hope)

Paisley’s heart and lungs struggle daily, and her future is uncertain. The Longs are running out of options, which is leading them toward a possible heart and lung transplant — a choice no parent should ever have to make.

Throughout their journey, one thing has remained constant: the unwavering support of their care team at Mott. “Mott is family to us,” says Ryan. “The relationships we’ve built with the nurses, doctors, and even the cleaning staff have all made a difference. Mott saved her life.”

It’s this kind of life-saving care, and research to understand and treat conditions like Paisley’s, that the Save A Heart campaign is all about.

Raising Awareness, Giving Back

Every year since Paisley’s birth, the Longs have partnered with local fire departments to organize a toy drive to help other families in situations similar to theirs. 

“Paisley spent her first Christmas in the hospital, and that was heartbreaking as brand new parents,” said Tiffany. “But the one thing that made it easier was being able to shop for her at Mott’s holiday store. I could stay right there with her and give her an amazing Christmas because of people donating toys. How special is that?”

Join Mott to Save More Hearts

During National Heart Month in February, the Save A Heart campaign ramps up its efforts to raise awareness about the impact of heart defects on children and families, and the lifelong care it requires. Funds raised by Save A Heart support research, patient care, and family programs at C.S. Mott Children’s Hospital. 

There are multiple ways to get involved, including:

• Donate to the Save A Heart Fund.
• Buy a Save A Heart t-shirt.
• Follow @MottChildren on Facebook and help spread the word.
• Become a campaign sponsor.
• Create an online fundraising page to share with friends and family.
• Host an in-person event.

With philanthropic support, the team at Mott can give kids like Paisley, and their families, hope for brighter tomorrows. To learn more or get involved, visit the Save A Heart website.