Three young brothers from Indiana are enduring a rare and challenging health battle after all were diagnosed with the same debilitating neurological condition, Chiari malformation. The parents of Lincoln, Norrin, and Remley Niece recently shared their emotional journey after the trio began experiencing frequent headaches that led to the life-altering diagnosis.
What is Chiari malformation?
Chiari malformation, which affects slightly less than one in 1,000 people globally, occurs when part of the brain at the back of the skull pushes through a natural opening and extends into the spinal cord, according to Johns Hopkins Medicine. Symptoms of the condition include neck pain, dizziness, unsteady walking, and poor hand-eye coordination, as noted by the Mayo Clinic. “It’s pretty scary,” the boys’ father, Ron Niece, told WRTV. “There is no doubt about it.”
A family’s journey through diagnosis and surgeries
All three brothers underwent surgeries to address their condition, leaving the family physically and emotionally drained. The boys now bear matching scars on the back of their heads, reminders of the intense battle they’ve faced.
“You just kind of become numb and go into autopilot,” their mother, Whitney Niece, explained to WRTV. “But it doesn’t make it any more emotionally easy, sending your kid off into surgery.” The youngest, Remley, was the first to be diagnosed in June 2022, but he initially did not require surgery. However, his struggles continued, and in August 2023, he underwent an operation.
Lincoln, the oldest brother, began experiencing headaches at age 5, which were initially attributed to a congenital heart defect. However, in February 2023, a CAT scan revealed that he, too, had Chiari malformation. He underwent surgery the following month. Norrin, the middle child, began showing symptoms shortly after Remley’s surgery, and he underwent his own procedure in January 2024, according to The Greenfield Daily Reporter.
The surgical process and complications
Each of the boys’ surgeries was performed by Dr. Laurie Ackerman at Riley Hospital for Children. The procedure, known as Chiari Malformation Decompression, involves removing a small portion of the skull and a three-by-three-centimeter piece of bone to relieve pressure on the brain and spinal cord.
“The goal of all of these things is to sort of disimpact the area,” Dr. Ackerman explained to The Greenfield Daily Reporter. “To allow fluid to move around there normally.”
While the surgeries were largely successful, Norrin and Remley faced post-operative complications. Both required shunts to drain excess brain fluid into their abdomens. Dr. Ackerman noted that it is highly unusual for all three siblings to suffer from the same condition, and researchers are exploring whether Chiari malformations may be hereditary.
Life after surgery
Despite the challenges, the boys have made significant progress and are mostly able to lead typical lives, though with some limitations. Their mother, Whitney, shared how difficult it is for the boys to avoid physical activities that could result in head injuries. “Just like the other day when it was really nice outside, and everybody else could go outside and ride something, Norrin is standing in the garage in tears because he can’t,” she told the Greenfield Daily Reporter.
Though many people with Chiari malformation never experience symptoms and do not always require medical treatment, the Niece family’s story underscores the condition’s potential to disrupt lives when it does present serious challenges. For now, the family continues to navigate their journey, grateful for the medical care that has given their boys a fighting chance to live a more normal life.