Meet Kid Captain Jackson Casteel
With expert care at University of Iowa Health Care Stead Family Children’s Hospital, Jackson Casteel continues to defy the odds of his rare genetic condition.
Jackson Casteel’s parents were given a bleak outlook after he was born at their local hospital in central Iowa: “Enjoy him for as long as you can.”
Jackson’s parents had prepared for the worst, that Jackson might not survive birth, but as his mother Sara tells it, she knew from the moment he was born that Jackson was a fighter.
So, the first-time parents put the heartbreaking moment behind them and sought further care at University of Iowa Health Care Stead Family Children’s Hospital.
Before Jackson’s birth
Prenatal tests showed anomalies, and she was put on bed rest due to high blood pressure. Sara went into preterm labor at 34 weeks, and, though she and her husband, Ross, were told of the possibility that he might not be breathing, Jackson was born at their local hospital “screaming at the top of his lungs,” Sara remembers. “It was the best sound ever.”
Born with multiple brain bleeds and a potentially fatal form of dwarfism, he stayed in the hospital’s neonatal intensive care unit for four weeks. After his discharge, Jackson’s parents were told to enjoy their remaining time with him at home.
“They didn’t have much hope for him,” Sara recalls.
The couple obtained a referral to medical geneticist Amy Calhoun, MD, at Stead Family Children’s Hospital and drove their son three hours to Iowa City. Calhoun – a doctor known for her advanced knowledge of rare genetic conditions – offered insight into what the future might hold.
“As soon as we went to the U of I and met with Dr. Calhoun, it felt like we were home. She took our situation and Jackson’s condition very seriously,” Sara says, recalling that Calhoun explained her concerns for Jackson’s long-term health based on her physical exam and his medical history, “but also assured us that Jackson ‘hasn’t read the textbooks and doesn’t know what he’s supposed to do.’ Those words resonate with us to this day.
“We’ve always said if Jackson shows a willingness to fight, we’ll fight along with him,” Sara continues. “He came out a little fighter and he’s just stayed that way.”
Expanding Jackson’s team, diagnoses
The Casteels were able to take Jackson home, where he received regular care from visiting nurses. However, at 4 months of age, Jackson was rushed to the emergency room of their local hospital for respiratory failure. Doctors whisked Jackson to the operating room to place an emergency tracheostomy tube, which allowed air to fill his lungs.
“This tracheostomy gave Jackson a stable airway and a new lease on life,” Sara said. “He was just full of color and energy and smiles.”
After three weeks in the pediatric intensive care unit, Jackson came home, and at 6 months old, he met another member of his care team at Stead Family Children’s Hospital: pediatric neurologist Michael Ciliberto, MD. That same day, his parents were told Jackson had infantile spasms, a severe form of epilepsy, which eventually progressed to Lennox Gastaut Syndrome, a form of intractable epilepsy.
With the help of his expert care team, a regimen was developed to control Jackson’s seizures, but at 10 months old, his parents received results of the final DNA tests, which showed Jackson also has a very rare genetic condition called X-linked recessive chondrodysplasia punctata type 1.
While not the fatal condition other doctors suggested he might have, the condition is a form of dwarfism that has been diagnosed in less than 150 people in the entire world. Due to his genetic condition, Jackson is shorter in stature; requires the use of a tracheostomy tube to help him breathe; and a gastronomy tube to help him eat.
At 18 months old, he was diagnosed with spastic quad cerebral palsy, a severe form of the condition, characterized by paralysis of both arms and legs, with muscle stiffness. This meant Jackson had issues coordinating muscle movements throughout his body, despite all the therapy sessions he received.
Around the same time, he was diagnosed at the children’s hospital with cortical vision impairment and optic nerve hypoplasia.
“These diagnoses confirmed what we had suspected: Jackson had little to no functional vision and was struggling to locate and track moving objects,” Sara said, noting he has been working with a vision specialist from the Iowa School of the Blind to find ways to help him interact with the world around him, with the limited vision he has.
Defying the ‘medical textbooks daily’
At age 3, Jackson began to have pain when sitting, standing, or rolling over. His medical team said he was suffering from scoliosis and dislocated hips on both sides. The team quickly referred Jackson to Stuart Weinstein, MD, an orthopedic surgeon. The only way to relieve the pain was bilateral hip surgery to put his hips back in place. The surgery was followed by a double spica cast – a plaster cast from his belly button to the tips of his toes – for six weeks. After his cast came off, Jackson was fit with a back brace to help with his scoliosis.
Now 7 years old and in second grade, the Panora boy eagerly looks forward to school, uses assistive devices to help him communicate, and blows kisses as his “kiss of approval.” His father noted that Jackson enjoys T-ball, which he plays with the help of adaptive equipment, and he loves music and watching basketball, football, and other sports.
“Hawkeye is a color and it’s his favorite,” Ross says, citing clothes and decorations for his room that Jackson chooses in black and gold. The family even had a Hawkeye-themed Christmas tree the past two years.
Jackson regularly returns for care at Stead Family Children’s Hospital, where he will have surgery for scoliosis in the future. His parents appreciate the expertise available at the hospital and the team approach to looking at Jackson’s health as a whole.
“They communicate with each other and come up with the best plan,” Ross said.
“Jackson continues to defy the medical textbooks daily, all because of the dedicated professionals in his corner who believe in him and will do whatever it takes to see him succeed,” Sara continued. “Jackson is a very happy boy, and he is thriving.”
Patient Stories
