Katy Boy's Family Gets Donor Heart Call During Heart Run

KATY MAGAZINE l MARCH 2019

By Natalie Cook Clark

While participating in a 5K run/walk to raise money for heart awareness, the Smith family got the call they had been waiting for. Their four-year-old son Rowan would be getting a donor heart.

Getting the Call

The Smith's got the call while participating in Graeme's Run; an annual run held at No Label Brewery in Katy, and named after a child named Graeme. Graeme was been born with a series of complex congenital heart diseases and disorders and fought as hard as he could until he passed away at the age of 2 1/2. His family honors his memory by raising awareness and funding research to and help families who are struggling with Congenital Heart Disease.

Getting that call was a surreal experience for the Smiths. "The caller had to call back twice to make sure I understood. I was in shock and then we went into action," says Susan, Rowan's mom. "We had a plan and we knew what to do." They got their bags, dropped older son Alex at a friend's house, and Rowan and his parents (Ed and Susan) went to the hospital.

First Heart Beats

The family celebrated as Rowan's new heart beat for the first time on Sunday. Rowan's progress has been steady and he's now been moved from ICU to a cardiac patient floor. Rowan's chest tube is out and he is down to IV's, his former PICC, and oxygen. He took his first steps post transplant on Wednesday, February 14.

Rowan takes his first steps with his new heart. Photo credit: Susan Smith

Rowan was born with Congenital Heart Disease more specifically Shone's Syndrome, and was diagnosed in utero. His first open heart surgery happened at four days old and the second one at four months. His family loves to say that Rowan rocks to his own beat. This is where the idea of his support group came from, Rowan's Rockin' Heart.

Thanking the Donor Family

"As happy as we are for Rowan to have his heart we are sad knowing that somewhere out there another family is going through unspeakable loss and have made such a unselfish decision," says Susan.

At the one year anniversary of Rowan receiving his heart his family is allowed to write a letter and submit it to the transplant organization. If the donor's family wishes to be known they will also be able to write a letter at that time and the organization will connect the families if both parties wish it. "We will write a letter of thanks," says Susan.

No More Surgeries

Over six months ago Rowan's symptoms returned and his family thought they were getting ready for surgery number three. However, tests revealed that Rowan was no longer a candidate for heart surgery. He needed a new heart completely. "We were all emotionally prepared for the third surgery and Rowan again showed us that he goes to his own beat," says Susan. "So we switched gears and started to anxiously wait for a new heart."

Waiting for a Heart

Susan says it was difficult waiting and hoping for a heart. "You have to take it one day at a time," says Susan. "If that day is too much then take it an hour at a time and just keep breaking it down until you get through it."

Susan, Ed, Alex, and Rowan enjoyed Walt Disney World thanks to Make a Wish Foundation. Photo Courtesy: Susan Smith.

Last April Rowan's family went to Walt Disney World as part of Make A Wish Foundation. "It was truly a special experience and he spent so much time with that talking Mickey Mouse," says Susan. "They really make it special and work to give him an experience that is unique from other little kids going to Disney."

Despite his heart condition Rowan is a normal little boy who loves spending time with his family especially his older brother, 8-year-old Alex. He loves Muppet Babies, superheroes, and Super Mario. He loves soccer even though he couldn't run and keep up with his brother or other kids.

Rowan's New To Do List

Rowan is on the road to recovery and has a long way to go. However, this four-year-old has plans and made a list of his plans he has for him and his new heart. "Top of his list is little things that we often take for granted. He can't wait to walk to the top of the stairs without getting out of breath. He can't wait to play soccer with his brother and attend the U.S.A. Ninja Challenge gym," says Susan. "He also looks forward to swimming. He hasn't been able to swim since August."

Starting Kindergarten

Rowan still has a lot of recovery ahead but things are looking good for him to be able to start kindergarten at Fielder Elementary in the fall. His brother Alex is currently a third grader at Fielder. Rowan loves school and attended Katy's Early Childhood Enrichment Center before he got to ill to attend. "His brother is really looking forward to introducing him to his school and letting him be able to attend like a normal student," says Susan.

Kind Words from Graeme's Family

Graeme's family was incredibly moved to learn that Rowan got the call while at their son's run. "We are keeping Rowan and his donor's family close to our hearts," says Stephanie, Graeme's mom. "I feel like it's confirmation from my son that I was led in the right direction." Graeme's family is making a big difference in the lives of others and raised $93,000 this year at Graeme's Run for The Children's Heart Foundation and Hayden's Heart. That's $30,000 more from last year's event! Learn more about Graeme's story and Graeme's Run here.

Thousands gathered last weekend at No Label Brewery to honor Graeme's memory and raise awareness about heart disease. Photo credit: Mama Bear Photography

For the Smiths' this is one 5K Run/Walk they will never forget. "Rowan has gone through spells of his life where he has been able to run a little but never to the degree that normal kid his age could. This is something he is really going to love to do with his new heart," says Susan.

Update on Rowan's progress

Katy Magazine originally published this story on Valentine's Day but we have updates. Rowan had his first biopsy the end of February and he is doing great. "We haven't had time to do anything off the list yet," says his mom Susan. "We are catching up on sleep, living in a bubble for now. Although he has more energy overall, he still fatigues quickly."

Rowan will have another biopsy the first of March and then another one a month after that. He still has a long road to recover but he's doing great, day by day.