Meet Kid Captain Nathan McDonald
Nathan McDonald and his family are used to overcoming difficult odds and medical challenges.
Nathan was transferred to University of Iowa Stead Family Children's Hospital shortly after birth when skeletal deformities and a hunch in his back were detected. He was diagnosed with infantile myofibromatosis, a rare tumor that grows in the skin, muscles, bones, and sometimes the organs of the chest or abdomen, which can then damage nearby organs.
“There was nothing on the ultrasound to indicate any pregnancy issues,” says Nathan’s mother, Kylie McDonald, who helped raise Nathan from a young age and adopted him and his brother several years ago.
Nathan was born right before Thanksgiving at a local hospital and was rushed to UI Stead Family Children's Hospital when abnormalities were detected because “they knew that’s where he needed to be,” Kylie says.
“In the beginning, Nathan’s prognosis was grim,” she recalls. Nathan’s birth mom and his father, Eric McDonald, were told to enjoy the holidays because they “may not get any more time than that.”
Rare disease, challenging odds
Infantile myofibromatosis is found at birth in just 1 out of 150,000 babies, and children with the tumors in their internal organs have only a 30% chance of survival without treatment.
“It was very back and forth. It was really scary,” Kylie says.
Born with skin nodules, as well as visceral involvement with tumors in the left atrium of his heart and aorta, in his abdomen and along his spine, Nathan started chemotherapy as an infant in an effort to shrink the tumors. He also was diagnosed with kyphosis, an abnormally exaggerated, forward rounding of the upper back, and scoliosis, a sideways curvature of the spine.
By the time he was 3, the tumors were not responding to the chemotherapy, and Nathan was frequently sick, prompting his father to ask to stop the treatment and let him live his life as long as he could.
“The doctors were very understanding,” Kylie recalls. “They completely understood his reasoning behind it all.”
His parents scheduled to have his port removed and ended the chemotherapy.
“When we did that, everything started to improve,” Kylie says. “It was like a miracle, honestly.”
Care continues after a ‘miracle’
Nathan’s tumors began to shrink, but before the age of 5, he began having seizures that were attributed to low blood sugar levels. Neurologists began treating Nathan with medication for the seizures and he has been seizure-free for the past five years.
More than two years ago, Nathan underwent extensive orthopedic surgeries to correct his scoliosis and kyphosis. The surgeries were successful, and Nathan gained almost 5 inches in height just from having the operation, Kylie says.
He spent two weeks in traction and was the first patient at the hospital to use a new traction walker in physical therapy that utilized weights to help him regain his balance.
“It was a learning experience for everybody,” Kylie recalls. “It was kind of a new thing. They knew it would work, but we had to learn to navigate it.”
His doctors noted that by the time of his scoliosis surgery, his tumors had disappeared.
Learning while overcoming
Nathan was prescribed a blood pressure medicine to ensure no extra pressure was placed on his aorta, which was dilated due to the extreme curvature in his back. That condition has also improved since his surgery, Kylie says.
“Nathan’s condition is rare, and has been a learning curve for not only our family, but for doctors and nurses alike,” Kylie says, recalling support their family received after Nathan’s surgeries. “It was hard, tiring, and grueling, but the entire time we were there, we felt like we had all of the support in the world.”
“I don’t feel like a number,” she adds, citing the hospital’s Child Life team and social workers for emotional support, along with the rest of his care team. “They’re just so attentive. Nathan feels they genuinely care about him and his condition. We are so grateful for the care they have given not only Nathan, but us as his parents, as well.”
Now 17 and a sophomore in high school, the Delta teen is learning 3D printing and computer coding, has been creating a Spiderman-type web shooter, and is an artist with a passion for comic book-style drawing.
“He’s smart. He’s super witty,” Kylie says. “Nathan is one of the most mature, caring, understanding, and loving young men you will ever meet. He has spent his entire life fighting the odds. With his disease being so rare, his story could inspire other children to fight with all they have or inspire parents to know that there is hope and light at the end of the darkest of tunnels.”
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