KATY MAGAZINE NEWS
February 14, 2019
By Natalie Cook Clark
Last Saturday, the Smith family got the call they had been waiting for. Their four-year-old son Rowan would be getting a donor heart. Coincidentally, the Smith's were participating in Graeme's Run, an annual Katy event to honor and raise awareness of children with heart disease. Their four-year-old son Rowan would be getting a new heart just in time for Valentine's Day. After two open heart surgeries and six months of waiting, Rowan's new heart beat for the first time on Sunday at 2:14 p.m.
Getting the Call
The Smith's got the call while participating in Graeme's Run; a run named after a child named Graeme who was been born with a series of complex congenital heart diseases and disorders. Graeme shared his love and cheer to all he met until his little body couldn't take it anymore and 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 Wednesday.
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 4 days old and the second one at 4 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."
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 Valentine's Day they will never forget. The chance to see their son, Rowan taking steps towards a new life with a healthy heart. "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. For Valentine's Day, Rowan hopes to be able to make it to the playroom down the hall but he will have to see. Texas Children's is great and offering activities to patients even if they are unable to leave their rooms.
Follow Rowan's story at Rowan's Rockin' Heart.