Nolan Larson – Heart Walk Ambassador

By Michelle Howe

It has been 25 years since the first Heart Walk was sponsored by the American Heart Association and the organization is making a positive impact on lives affected by heart disease. It is estimated that someone dies every 43 seconds from some form of heart disease but through research patients are living longer and enjoying a better quality of life, thanks to new treatments, prevention strategies and a deeper understanding of these diseases.

In fact, heart disease deaths have declined steadily over the decades and it is believed that it will one day no longer be the leading cause of death in the U.S. As an example, the stroke death rate has dropped from the No. 3 cause of death in the U.S. to No. 5 in five years.

That’s a promising outlook for 2018 Heart Walk Ambassador, six-year old Nolan Larson, who was born with Tetralogy of Fallot, a congenital heart disease (CHD). Nolan arrived to parents Nicholas and Caitlin Larson at 37 weeks (about 3 weeks early) on November 7, 2011. At first things seemed normal despite a small heart murmur and one hand that had only four functional fingers. After a five day stay in NICU, the Larson’s were able to take Nolan home. But at the one month follow up appointment, the doctors decided to do another echo (ultrasound) and the CHD was discovered. Nolan had a hole in his heart allowing un-oxygenated blood to flow into the oxygenated blood. The right ventricle in his heart was having to work harder to pump, and Nolan had tissue obstructing his pulmonary valve. Tetralogy of Fallot can cause the un-oxygenated blood to flow into the oxygenated and turn the baby blue as they are not getting enough oxygen to their system - giving it the name “Blue Baby Syndrome.” This meant that Nolan would require open-heart surgery.

The Larson’s monitored Nolan’s progress every month and waited 5 ½ months before having the surgery. Nolan ate well and was following his growth pattern - and met his milestones within normal limits. With the exception of his “little hand” Nolan seemed like a normal baby. Since all the cardiothoracic surgeons in the area are at the University of Iowa, on the morning of April 25, 2012, the Larson’s brought Nolan to the pediatric cardiology team there. The Larson’s spent a restless, anxious day, since this particular surgery requires that the heart be stopped. After 9 hours of waiting, they received news that Nolan’s surgery was a success. The Larson’s spent the next seven days with Nolan in pediatric NICU before going home. Today, he has no restrictions. Nolan loves video games, legos and sports. The Chicago Cubs are his favorite baseball team. “We have been very fortunate that he has only needed one surgery,” says Caitlin. “Most kids with Tetralogy of Fallot have had two or three surgeries.”

“I would like for us to be able to fix the problem without having to stop the heart, in the future,” says Caitlin. “It was the most terrifying thing for me as a mother, knowing his heart would be stopped.” The American Heart Association continues to do research into new methodologies and there is a study being done using catheters right now. “It took us awhile to get going with volunteering and advocacy, but we are excited to be part of the 25th anniversary of the Heart Walk,” Caitlin says.

This years Heart Walk in Cedar Rapids is on Sunday, September 9th at the McGrath Amphitheater. Registration begins at 8 am. There will be CPR demonstrations, a bouncy house and slides. Last year’s fun included a hula hoop contest.

The Larson’s will be walking with their team this year – “The Irregular Beatles.” As for Nolan, he will start first grade this fall at St. Matthew’s school. Later-on in life he will need a valve replacement and when that happens will depend on how well he tolerates activity and how much he gets fatigued. “We hope to wait until he is full grown - in his early 20’s,” says Caitlin.

If you’d like to participate in this worthy cause, you can call 319.536.3899 or send an email to michelle.catlett@heart.org.

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