Other than being born five weeks early, there was nothing unusual about Jayden Santiago’s birth or development – until he turned 7 months old.
“He’d been sitting on his own by that point, but then he just stopped. At bath time, he’d cry, turn red and shake. He didn’t want to play. I knew something was wrong,” recalled his mother, Christina Olson. “He went from being a happy baby to almost regressing.”
At first, their pediatrician thought Jayden had an abdominal issue that was making him uncomfortable or causing him pain.
“Then we ended up at the Emergency Department three times in one week. They still thought it was an abdominal issue.”
Christina then took Jayden to see Dr. Rajeev Nagpal, a pediatric gastroenterologist affiliated with Advocate Children’s Hospital.
“He took one look at the way Jayden was sitting in his infant carrier and asked how long he’d been holding his neck like that,” she said. “He told me it wasn’t an abdominal issue – it was spinal.”
Dr. Nagpal called Advocate Children’s Hospital to alert them that Jayden needed to be admitted for an emergency MRI. The MRI revealed Jayden had a large cyst compressing his spinal cord. He would need surgery.
“Our surgeon, Dr. Dimitrios Nikas, said Jayden was likely born with the neurenteric cyst, which was growing with him. It had grown to the point that there was no visible spinal cord in his neck on his MRI, with the cyst causing him extreme nerve pain and essentially paralyzing him. It was not a textbook case.”
Dr. Nikas decided to treat the cyst conservatively because the cyst membrane was wrapped around Jayden’s spinal cord. After surgery, Jayden stayed in the hospital for a few days and was able to go home. He recovered and appeared to be back to his normal, happy self.
“But eight months later, I started seeing the same symptoms. We went back to the hospital, and another MRI showed the cyst had come back,” Christina explained. “This time, Dr. Nikas had to treat it more aggressively, performing a laminectomy which creates space by removing the lamina — the back part of a vertebra that covers his spinal canal.”
After surgery, Jayden developed aseptic meningitis and hydrocephalus. The meningitis destroyed his body’s ability to absorb cerebrospinal fluid (CSF), and fluid began building on his brain. Dr. Nikas placed an external ventricular drain (EVD) to temporarily facilitate draining, hoping it would give Jayden time to heal and his body would again start absorbing the fluid.
“The temporary drain was removed after ten days, but a few days later, I noticed signs of hydrocephalus. Dr. Nikas indicated Jayden would need a ventriculoperitoneal shunt, which is a cerebral shunt that drains excess cerebrospinal fluid, and it would be permanent. It was such a major decision to have my 15-month-old son undergo another surgery, so I decided to obtain a second opinion, which Dr. Nikas was happy to facilitate. It was comforting that it was important to him that I felt at ease with this decision. The opinion of the secondary pediatric neurosurgeon was exactly what Dr. Nikas suggested.”
Jayden underwent surgery and had the permanent shunt placed. Dr. Nikas noted another abnormality in Jayden’s spinal column: a tethered spinal cord. Normally, the spinal cord moves freely inside the spinal canal. A tethered cord is when part of the spinal cord is attached inside the spinal canal, which limits movement of the spinal cord.
“Since Jayden had gone through so much that summer and wasn’t experiencing any symptoms of a tethered cord, we took a ‘wait and see’ approach, monitoring with annual MRIs,” she said.
However, when Jayden was 4 years old, slight changes were observed on his MRI. To lessen risk of irreversible damage, Dr. Nikas suggested surgery to detether.
“Jayden had surgery and developed meningitis again. Nothing was easy, but he’s a fighter – my little miracle. He always comes through.”
‘Forever grateful’
In all, Jayden has had five back surgeries and two brain surgeries. Christina was told he might experience developmental delays and nerve damage. But Jayden is thriving.
“He’s 12 years old now and almost six feet tall. He’s in his school’s gifted program for more advanced students. If you saw him, you’d never know he had such a difficult start in life, and I have to attribute that to his care team at Advocate Children’s Hospital.”
Christina’s whole family is grateful for the care Jayden has received over the years.
“They saved his life,” shared Christina’s stepfather, Gary Shamasko. Gary’s company, Jamerson & Bauwens Electrical Contractors, has been generously supporting Advocate Children’s for more than 25 years, so he was very familiar with the hospital. “We’ll be forever grateful to the whole team. I can’t say enough good things about them.”
“They really became like family,” added Christina. “Day in and day out, they were always there to offer comfort and support. I’m so thankful for the nurses who would sit with me, sometimes for hours, and all the time they dedicated to us.
They are our heroes, and I can’t thank them enough.”
How you can help
Advocate Children’s Hospital relies on charitable support to expand access to care and grow its programs and services. You can help families like Jayden’s by making a gift today.