MAX-ed Out With Love

How a community came together to surprise a 17-year-old patient waiting for a heart

The Williams family standing under a yellow umbrella

Written by Molly Brennan and Coral Denton

For most young people, the onset of the COVID-19 pandemic meant switching to online classes, spending time at home and having more free time than they know what to do with. For Max Williams, a 17-year-old heart transplant patient at UF Health Shands Children’s Hospital, the pandemic meant strict isolation from family and friends, and an added worry that his transplant status could be affected at any moment.

Max, a patient at UF Health since Feb. 3, was first diagnosed with heart problems at 18 weeks gestation through a fetal ultrasound. At three days old, he had a pulmonary artery banding and a ductus stent.

By the time he was 3 years old, Max had undergone multiple surgeries and gone into cardiac arrest several times. In May of 2005, Max received an extracardiac pericardial Fontan, and for the next 14 years, he lived a seemingly normal life.

Max’s family moved from Ohio to Florida, where he attended school and participated in recreational sports. He even received his driver’s license in the summer of 2019.

At the beginning of the 2019-20 school year, Max’s parents noticed he wasn’t quite himself. Max was rapidly losing weight and did not have the energy to finish a full day of school without falling asleep midday.

In November 2019, his cardiologist discovered increased heart failure. Max’s cardiologist adjusted his medication in hopes of better results.

However, during the first week of December 2019, Max was unable to wake up for school. He was quickly taken to the Orlando Health Arnold Palmer Hospital for Children, where it was clear Max was out of medical options — Max needed a new heart.

Max was transferred to UF Health Shands Children’s Hospital where he met with Bill Pietra, M.D., chief of the UF College of Medicine Congenital Heart Center and clinical professor of pediatric cardiology. Dr. Pietra and his team spent the first week of January with Max for his transplant workup.

After waiting at home for a few weeks, Max had to be admitted to UF Health Shands Children’s Hospital, where he has now waited more than 125 days for a new heart.

Erin Williams, Max’s mother, said being a transplant patient during a pandemic is challenging, to say the least.

“I was scared,” she said. “Scared of an invisible virus that just by the simple act of hugging my child, I could pass to him and jeopardize his health and his status on the transplant list.”

On top of the physical health concerns, the virus also brings about mental and emotional health concerns. Erin explained that she and Max have isolated themselves to minimize any COVID-19 risk.

“Prior to the COVID-19 [visitation] restrictions, Max had a steady rotation of visitors,” she said. “From mid-March until early June, he had only me. This took a tremendous toll on all of us.”

When family friend and community member Linda Etheridge heard about Max’s extended stay at UF Health, she saw it as a call to action.

Throughout his wait, Max’s Williston, Florida, community has supported the Williams family, creating Donate Life T-shirts and wearing them every Wednesday during the school year, sending gifts, calling Max, and doing whatever can be done to lift his spirits. Etheridge decided to take things a step further — she had seen news coverage of drive-by parades at local assisted living facilities and immediately thought of Max.

“He has not been able to see many of his family members and friends since late March,” Etheridge said. “I imagined that this must have added to the difficulty he was facing being ‘stuck’ in the hospital as a 17-year-old.”

Etheridge reached out to Erin, who enthusiastically approved of the idea and involved Max’s care team at UF Health.

Taylor HintonCCLS, child life specialist for Unit 44, met the Williams at the start of Max’s hospital stay and knew the parade would mean a lot to him.

“Hospitalization can impact a patient in various ways, but for a teenager it can impact their privacy and socialization with their peer group the most,” Hinton said. “Some days it is hard to always have a positive attitude and look at the bright side of each situation, but this parade can be a positive light in a sometimes dark situation.”

On the overcast morning of Saturday, June 6, 17 cars full of Max’s friends from school, church, his community and even his little league baseball coach looped through the Circle of Hope to surprise their favorite patient. Some cars were decorated with signs and balloons, all with windows rolled down and smiling faces inside.

Close to 50 people made the drive from Williston to UF Health Shands to visit Max and lift his spirits. Max’s nurses said it was the most spirited they had ever seen him.

Erin also is grateful to the UF Health nurses on Max’s unit who not only play games and share treats with him, but also threw him a “100 Day Party” for his 100th day in the hospital.

“There are a lot of kids and adults waiting,” Max said. “Some of them have been waiting a lot longer than me, and I have been waiting a long time. Some of them are just tiny babies. They haven’t even left the hospital yet. If someone you love dies, you can’t change that, but you can make the best of it by giving their organs to people who could go on to do a lot of really good stuff in the world.”

Nationally, more than 110,000 people are waiting for organ transplants, and 3,500 of them are waiting for hearts. While her son waits, Erin wants to encourage more people to consider the impact donation has.

“With so many waiting, why not be a donor?” Erin said. “What will your loved ones do with your perfectly functioning heart, if you no longer have brain activity? They can donate them and give life to those organs in someone else. Your loved one will live on for generations to come. Your loved one’s heart will give Max a senior year of high school, a chance to live a full life as a young adult, a chance to become a father himself.”