Krystal Robertson’s hospital room does not look like that of a typical 6-year-old. The walls are covered with One Direction and Iowa Hawkeye posters, her Xbox 360 always has a zombie game playing, and her door is filled with photos of Krystal with her family, friends, and medical team.
Also unlike a typical 6-year-old, Krystal has been in and out of University of Iowa Stead Family Children’s Hospital her entire life.
After Krystal was born, her parents, Sarah Peters and Shane Robertson, noticed Krystal’s chest “caving in,” and her fingers were quite long. She was also showing signs of heart problems, so the family was referred to UI Stead Family Children’s Hospital for genetic testing.
The results confirmed that Krystal has neonatal Marfan syndrome, a genetic disorder that weakens the body’s connective tissue, which acts as “glue” that helps support organs, blood vessels, bones, joints, and muscles.
For those with Marfan syndrome, the weakness of this “glue” can lead to serious complications.
When Krystal was 4 months old, her heart began to fail, and she underwent her first surgery to repair valve damage. She had another surgery in September 2012, where doctors used pig valves to replace the valves in her heart that were leaking significantly.
Since then, Krystal has been waiting for a heart transplant.
“She’s at the top of the list,” says Sarah. “But that could mean she could still be here another year. It could be tomorrow, it could be next week, so we don’t know.”
It has been difficult for Krystal’s family to see her spend over a year in the hospital.
“When you can’t do anything and it’s out of your hands and you have to just sit back and watch, it’s a feeling that I’ve never felt,” says Shane. “I know that she just wants to be a normal kid.”
Pediatric cardiologist Heather Bartlett, MD, has been a member of Krystal’s care team since the beginning.
“She told us that Krystal was like her own kid because she’s been with her for so long, and that she just wanted the best for Krystal,” says Sarah. “She’s been amazing.”
Since neonatal Marfan syndrome affects many different parts of the body, Krystal also sees pediatric specialists in surgery, orthopedics, gastroenterology, and ophthalmology.
“It’s not just one person deciding on what to do for treatment,” says Sarah. “It’s a whole team of people.”
Krystal has a team of family support, as well. Shane travels to and from Davenport daily for work, while Sarah stays at the Ronald McDonald house with Krystal’s younger sister, Shyann, and older brother, Isaiah. Krystal’s older brothers, Blake and Beau, visit on weekends.
Despite her situation, Krystal keeps a positive attitude. “She lights up the room,” says Shane.
Sarah and Shane are appreciative of the doctors, nurses, and staff at UI Stead Family Children’s Hospital.
“’Thank you’ isn’t enough,” Sarah adds. “You guys have gone above and beyond to make sure Krystal’s comfortable. She’s still here with us.”