A New Heart Lets First-Grader ‘Finally Act Like a Kid’

When a congenital heart condition went undetected at birth, one family was shocked to learn their 4-year-old needed a transplant. But today, he’s thriving.

7:00 AM

Author | Beata Mostafavi

 

Landyn Cooley is often climbing trees, racing friends — and never sitting still.

MORE FROM MICHIGAN: Sign up for our weekly newsletter

But as the rambunctious 6-year-old prepares to start first grade, his family remembers a different time: when Landyn spent most days napping, doodling and watching cartoons in the hospital room where he spent nearly six months of his life.

What made the difference? A new heart.

"Life is actually a lot crazier and more hectic now if you can believe that," his mother, Chelsea Dalek, says with a laugh. "He finally has the energy to act like a kid."

A surprise diagnosis

As a baby, Landyn was constantly sick but there were few answers why.

He often wheezed and had shortness of breath. Simple things like crying, eating and talking triggered vomiting. There were bouts with pneumonia. Doctors thought asthma and a weak immune system were to blame, and breathing treatments temporarily seemed to help.

But right after Thanksgiving in 2015, when Landyn was 4 years old, a chest X-ray at an urgent care clinic prompted the doctor to refer the Battle Creek-area family to a heart specialist in Kalamazoo.

When medication didn't work, Landyn was transferred by ambulance to University of Michigan's C.S. Mott Children's Hospital. Doctors at the Congenital Heart Center diagnosed Landyn with congenital heart condition restrictive cardiomyopathy, which was undetected at birth. His heart muscles were able to squeeze blood out to the rest of his body, but unable to relax enough to let blood back in. As a result, blood had started to back up into his lungs.

"They told us his heart wasn't working the way it was supposed to and that he needed a new one as soon as possible," Dalek says. "I lost it. We went from thinking we had a mostly healthy little boy with some asthma problems to hearing he had a heart problem so serious he'd need a heart transplant to live. It was terrifying."

Landyn spent the next 177 days at Mott, including Christmas and his fifth birthday, waiting for a heart where Dalek says they became "like family" with hospital teams.

Then one night in March, a charge nurse woke Dalek up to give her big news: Landyn had a heart.

"I asked her to repeat what she said and then bawled like a baby," Dalek says.

SEE ALSO: Tiny Heart Repaired While Baby Still in the Womb

 After two months of recovery from the transplant surgery, Landyn could finally go home.

"When you're in that situation where you need someone else to be selfless in their worst time to save your child's life, it puts into perspective how serious the decision to be an organ donor is," Dalek says. "Landyn had no other options besides a heart transplant. Because of this gift, he gets another chance to live life to the fullest. It's why he's here."

Life after transplant

Today, Landyn is "full of life," enjoying fishing, playing with friends and cousins, riding his bike and sometimes even boasting about the zipper scar on his chest, his mom says. Although he missed most of preschool because of his health, he now loves school and is looking forward to new adventures in first grade this year.

With every milestone, "we think about how far we've come and where we once were and that we aren't promised every day," Dalek says, adding, "There were days he was so sick I wasn't sure I'd ever be able to leave the hospital with him."

His caregivers at Mott describe Landyn as playful and spirited, recalling times he'd challenge them to Nerf gun fights or how he nicknamed his pediatric cardiologist, Kurt Schumacher, M.D., "Dr. Hulk" because of their shared love for superheroes and the Incredible Hulk.

"Our goal is for patients to have no limitations after transplant," Schumacher says. "Landyn is as active as a child can be, living a full and happy life, which is what we hope for."

But a transplanted heart comes with its own risks of developing disease in the future, Schumacher notes.  

Nearly 1 in 100 babies are born with congenital heart disease, underscoring the need for ongoing research to better treat patients long term and to someday find effective alternatives to transplants.

"Congenital heart conditions are the most common birth defect we see in the country," Schumacher says. "We have come a long way in treating pediatric heart disease, but we still don't have a perfect treatment for some conditions or preventing diseases that can develop after a transplant.

"Research is the only way we are going to learn how to do it better."


More Articles About: Children's Health Congenital Heart Disease Heart Failure CS Mott Children's Hospital Cardiovascular: Diseases & Conditions
Health Lab word mark overlaying blue cells
Health Lab

Explore a variety of health care news & stories by visiting the Health Lab home page for more articles.

Media Contact Public Relations

Department of Communication at Michigan Medicine

[email protected]

734-764-2220

Stay Informed

Want top health & research news weekly? Sign up for Health Lab’s newsletters today!

Subscribe
Featured News & Stories
Health Lab
How to prevent your kids from getting food poisoning
About 48 million people fall victim to food poisoning each year. Prevent getting food poisoning with these six tips.
kid in corner sad with shadow of two parents holding hands on hips looking mad and room and everything is yellow and a shadow of close up of parent yelling at a child in corner
Health Lab
Naughty or nice? Many parents rely on threats to manage misbehavior
When young children’s behavior becomes challenging, many parents resort to threats – from taking away toys to threatening that Santa will skip their house, a national poll suggests.
older man with glasses standing at balcony with back to glass windows
Health Lab
Roy’s Michigan Answer: Second opinion saves patient’s heart
Michigan Medicine's team of cardiology experts offered an advanced, minimally invasive coronary intervention, which restored one patient back to good health
patient family and child life team member smiling and then a photo next to that one with the same worker helping someone in a wheelchair in a patient office
Health Lab
A pediatric program helping adults through cardiovascular disease, surgery
A child life program that has helped kids and their families reduce stress and anxiety associated with hospitalization and illness is now finding success with adult patients undergoing complex heart procedures as well.
Health Lab Podcast in brackets with a background with a dark blue translucent layers over cells
Health Lab Podcast
Tips for managing anger in children
Expert offers strategies to help kids manage intense emotions as many parents report setting a bad example for anger management, worrying their child’s anger will cause problems.
young adult male hugging blonde haired dog
Health Lab
Cutting edge brain neurostimulator device significantly reduces 21-year-old’s seizures
A 21-year-old patient benefits from a novel application of responsive neurostimulation, also known asRNS, surgery to reduce seizures from drug-resistant epilepsy.