By TONY GUERRERO
Hays Post
After spending her entire life living with a rare heart defect, 16-year-old Kaylee Stuart is looking forward to something she has never had before, a chance to live without limitations.
Kaylee is the daughter of Relaford Warren Stuart and Krista Stuart of Hays. She was born with Hypoplastic Left Heart Syndrome, a congenital heart defect in which the left side of the heart does not fully develop and cannot effectively pump blood. As a result, the right side of the heart must pump blood to the lungs and the rest of the body.
Relaford said Kaylee recently underwent a heart transplant at Children's Mercy in Kansas City. He said the family was told to expect a wait of up to two years after she was placed on the transplant list April 6.
"We got the call a little over six weeks after we were on the list saying, 'Hey, we got a match. You need to get here.'" he said.
At 8 p.m. May 13, Relaford said Krista was on the phone with tears in her eyes. Relaford assumed the worst and thought she had received tragic news before she told him Kaylee would be getting a new heart.
"She put the phone on speaker, and we were like, 'This isn't a test?' Relaford said. "It was a roller coaster of emotions. Happy, but it scared the daylights out of you. I knew it needed to happen, but it's happening now?"
Relaford said the family packed that same night. Before leaving, he said Kaylee wanted one last chance to say goodbye to a couple of friends, which turned into several friends. The family arrived in Kansas City at 1:30 a.m. the next morning.
"Kaylee said she wanted to tell her friends goodbye because 'I don't know if there's a possibility that this could be the final,'" Relaford said.
Relaford said Kaylee underwent surgery at noon May 14 and came out of surgery early May 15. He said doctors initially believed Kaylee might need both a heart and liver transplant because her heart condition had affected other organs.
However, during surgery, doctors determined only the heart transplant was necessary, believing her liver and kidneys could recover with improved circulation from a healthy heart.
"To date, the liver is looking good, and her kidneys have turned around, so we're hopeful that she won't have to have any other major surgeries, but there's always that possibility that she could need another heart or liver down the road," Relaford said.
Relaford said Kaylee's recovery is ahead of schedule, and she is doing well. He said she could return home from Kansas City in early August, or sooner if she continues improving at her current pace, in time for her to start her junior year at Hays High School.
As of May 28, Relaford said biopsies showed no signs of tissue rejection, and subsequent tests have continued to show positive progress.
"Her new heart is still needing to relax a little bit, but [doctors] say that can take some time, and that's not uncommon. At this point, everything's going really good," he said.
A GoFundMe has been established to help support Kaylee's heart transplant journey and has raised almost $28,000 at the time of publication. According to the fundraiser, Kaylee underwent multiple open-heart surgeries in the first two years of her life.
During the last year, Kaylee underwent several additional open-chest procedures related to her pacemaker and revisions, according to the GoFundMe.
Donations can be made to support her recovery here.
"I think it got blown out of the water," Relaford said. "The goal was well exceeded. We're very fortunate, blessed and thankful for everyone. Especially for the thoughts and prayers."
While Kaylee ultimately did not need a liver transplant, Relaford said the liver would have come from the same donor who provided her new heart.
"We're so thankful for the donor family. I mean, it's sad that another life had to pass in order for this to happen, but we're so grateful," he said. "We're forever indebted to that family."
Relaford said transplant privacy rules prevent the family from knowing the identity of the donor.
"We have expressed our wishes that we would like to meet the donor family. [The doctors] took that into account but said it's ultimately not up to them. They will relay our wishes," Relaford said.
Relaford shared a conversation he had with Kaylee after surgery in which she said, "I'm kind of two different people now."
One of the family's hopes after Kaylee's recovery is to complete a Make-A-Wish trip that was approved before the transplant. Because of the transplant, Relaford said her travel will be restricted for about a year.
Relaford said they hope to take the trip sometime next summer, before Kaylee's senior year, if her recovery continues to progress. Beyond that, he said Kaylee is excited to return home, spend time with friends and sleep in her own bed.
"She's been very excited from the get-go because she's always focused on 'You mean I'm going to be able to do these things I couldn't before?'" Relaford said.
Relaford said that as her heart condition progressed, it increasingly affected her daily life. He said she became winded easily, struggled with stairs, experienced frequent migraine headaches and faced limitations in sports and activities.
However, despite her condition, Kaylee participated in cheerleading, dance, tumbling and gymnastics.
"There was always that want or desire to be able to do more," Relaford said.
Kaylee has an interest in nail technology and beauty. Relaford said she is excited about attending college with her friends and has discussed possibly attending the University of Kansas, Kansas State University or even a school in Texas.
Relaford's advice to parents facing a similar situation is to never lose hope.
"Don't give up and trust in God. It's on his time. Don't be afraid to reach out to your family and friends. It's amazing the goodwill that's left in this world," he said.
You can continue to follow Kaylee's road to recovery at kayleestuart.blogspot.com