What Pediatric Heart Failure Looks Like and What You Can Do to Recognize It

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Unless there’s a significant family history or concerning risk factors, chances are heart failure is not something you give much thought to when it comes to your kids. While risk factors usually lead to close monitoring, which can lead to early detection, a child may still develop heart problems even with a perfectly healthy history. Fourteen-year-old Mackenzie Collins is the perfect example of that.

Mackenzie’s story

Mackenzie was a healthy teenager with no family history of heart failure. Nevertheless, after nearly 14 years of perfect health, she was diagnosed with dilated cardiomyopathy by cardiologists at the Betty Irene Moore Children’s Heart Center at Stanford Children’s Health, a progressive form of heart disease that causes the heart muscle to enlarge and stretch. When this happens, the heart becomes weak and is unable to pump blood sufficiently to the lungs and body.

Before she knew it, Mackenzie was placed on the waitlist for a heart transplant. “I was in total shock. We have no history of heart disease in our family,” says Tiffany Collins, mother to Mackenzie. “One minute I had a perfectly healthy child, and the next I’m talking with doctors about a heart transplant.”

Mackenzie luckily found a matching donor just a few months after being diagnosed and even went on to become Stanford Children’s Health 500^th heart transplant patient—a journey that has spanned for more than 35 years. “We successfully transplanted Mackenzie Collins, our 500^th pediatric patient who required a heart transplant, only a few months ago,” explains David Rosenthal, MD, Director of the Pediatric Advanced Cardiac Therapies (PACT) program at Stanford Children’s Health. Reaching this milestone is an admirable achievement that makes Stanford Children's Health part of a very unique group. “Very few pediatric hospitals have achieved this landmark. This accomplishment speaks of the longevity and high volume this program has had for a sustained period of time. It shows an amazing institutional commitment to pediatric transplants—not just of hearts, but of all organs—for many decades, and I think that’s a tremendous achievement.”

But Mackenzie might not have been so lucky had it not been due to her family and doctors’ alertness and close monitoring of her condition’s progress, especially when she’d never shown symptoms before. “While it sounds strange that Mackenzie and her family were unaware of her heart failure, this is fairly common for teenagers with dilated cardiomyopathy,” says Dr. Rosenthal. “She had been thought to be in good health until maybe about three or four weeks before coming to us, and at that time, she had been dealing with an upset stomach that didn’t follow the usual pathway of recovery.”

Warning signs to look out for

Heart disease symptoms can be complex, as they depend on the type of heart disease and can be influenced by gender, race, and other uncontrollable factors. Symptoms also depend on whether the patient is an infant or older. Infants, for instance, may show symptoms by sweating while feeding, struggling with gaining weight or feeding, or having blue lips or skin. Young children and teenagers, on the other hand, have different symptoms, which include chest pain, heart palpitations, pale skin, shortness of breath, and fatigue.

Mackenzie's first symptoms, for instance, were loss of appetite and energy, which were soon followed by vomiting and trouble breathing. Seek emergency medical care if your child is experiencing any of these symptoms, and keep in mind that early intervention is key to saving lives. "It's important to seek care when what looks like a run-of-the-mill regular illness isn't following the usual pathway of recovery. There's no need to seek out medical care for someone who's got no symptoms at all," asserts Dr. Rosenthal.

What you can do

While most kids with heart defects can live life with little to no restrictions, it’s still something that must be monitored for better outcomes. And with many pediatric heart failure patients showing no symptoms, it’s important to be extra aware and keep up with regular medical checkups.

Helping your kid follow a healthy lifestyle may significantly reduce their risk of developing heart disease. Additionally, you should also take charge of their medical conditions to make sure their cholesterol and blood pressure levels are in check. And when in doubt, always check with your pediatrician to help regulate them.

But there’s another key action we can all take—regardless of if you are a parent or not. “There are never enough donors. Both children and adults get sick, and some will even die waiting for a donor,” explains Dr. Rosenthal.“It is important for everybody who's healthy to pause for a moment and ask themselves if they're willing to be a donor, and if so, it's relatively easy to sign up to be a donor."

Mackenzie's story shows that heart disease is not 100 percent preventable. But by taking measures that prioritize your kids’ health and knowing when to seek medical assistance, the risk can be reduced significantly.

Stanford Children’s Health is ready to help more kids like Mackenzie overcome their health challenges. Reaching out to doctors at Stanford Children’s Health can help you determine the next steps in taking care of your kids’ health. Click here to learn more about their innovative Pediatric Advanced Cardiac Therapies (PACT) program and how they've successfully combined their heart failure and heart transplant programs in order to improve outcomes.