GREENFIELD — Parents often wonder what is going on inside their children’s heads.
Lori Tutrow knows. She can identify her kids by their MRIs.
Keegan and Kaylee Tutrow each have undergone multiple brain surgeries within the past decade, and because of that Lori has become somewhat of an untrained authority on both their brains and in neurology.
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“I’m not an expert, but I am a mom.”
She is a mother of two children with Chiari malformation, a rare brain disorder in which part of a person’s brain (the tonsils) breaches the spinal canal. According to Mayo Clinic, “it occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
Keegan, an incoming Greenfield-Central High School junior and Cougars JV baseball player, was the first of Lori and her husband Dan Tutrow’s children to be diagnosed.
“The first thing I can remember was getting this terrible headache in second grade,” Keegan said. “I remember crying in class and going to the nurse’s office. I never go to the nurse’s office.”
Keegan spent the rest of the day lying on a couch with his eyes closed trying to block out any noise around him in fear it would aggravate his aching head. It was his first migraine.
From there, Lori remembers, Keegan only got worse. He started coming home from school every day, dropping his backpack on the ground and going immediately to bed. He slept through dinner and through the rest of the night until it was time for school the next morning.
Sleeping was the only way he could deal with the pain.
Keegan developed other symptoms, too. Once, Lori walked into the bathroom to find Keegan running his hands under scalding hot water. His hands were cold, he said, and he was just trying to warm them up. His hands, in fact, had gone numb. He couldn’t feel anything.
Much to her dismay, when she took him to the hospital, the doctor told her Keegan’s symptoms were unrelated. When she told him about his trouble swallowing, he suggested that he might just be anxious about eating.
“I was like, ‘Really?!’ Lori said, recalling her frustration with the misdiagnosis.
It took a year of failed attempts trying to cure Keegan of his ailments before Lori met Dr. Jodi Smith at Riley Hospital for Children.
Upon learning Keegan’s symptoms and seeing his MRI, Smith had a hunch as to what the issue might be, Lori said. She ordered a full spine MRI to corroborate her intuition, and when they got it back she was proven correct.
Smith diagnosed Keegan with Chiari I malformation as well as syringomyelia, a related condition caused by Chiari that results in the blockage of spinal fluid to the brain, according to the American Syringomyelia & Chiari Alliance Project (ASAP).
She almost instantly recommended Keegan undergo decompression surgery, an operation that calls for the removal of small bones and the shaving back of another. According to ASAP, the surgery “reduces compression of the brain stem and allows the tonsils to return to their natural position.”
While decompression surgery is not always needed to treat Chiari, Smith recommended it for Keegan whose quality of life and safety were at risk.
In a way, Lori was relieved. Of course, there was nothing comforting in knowing her child had brain disorders, but there certainly was some satisfaction in finally discovering what was torturing him.
For the Tutrows, the possibility of others avoiding their agony of living in the dark for a year is the root of their determination to spread awareness about Chiari malformation.
In the years following her children’s diagnosis, Lori has become the Hancock County ASAP support group leader. She and her family have become instrumental in helping other families, such as the Duricks of Greenfield-Central, deal with the emotional impact of learning a loved one has Chiari malformation.
“It was so nice to be able to talk someone who had gone through it,” said Shawna Durick, whose daughter Makayla was diagnosed with the disorder in 2012 and had surgery later the same year.
The Tutrows, who also plan an annual fundraiser to raise money for Chiari research, said one of the most important aspects of what they do is letting people know Chiari is out there.
Unfortunately, when dealing with the brain, a wide array of symptoms can be associated with the disorder, often making it difficult to diagnose.
“The best message we can put out there is for people to get a hold of their own MRIs,” Lori said. “You need to look at it and actually see for yourself. It’s not hard to spot if you know what you’re looking for.
“With Keegan, we didn’t know to ask for it. We were just parents listening to what doctors told us. What did we know? But you have to know, because they might not.”
“It’s not necessarily their (doctors’) fault,” Keegan added. “It’s a lack of exposure to it, a lack of material that’s the problem.”
The other problem, at least for Keegan, is that decompression surgery does not always fix what’s wrong.
Unlike for Makayla Durick, the decompression surgery, the “gold standard in Chiari treatment,” was not a cure.
While Durick’s symptoms all but disappeared after surgery, Keegan’s improved initially but returned after about six months.
In the years after the surgery, Keegan has since been diagnosed with a pair of related disorders called Ehlers-Danlos Syndrome and intracranial hypertension.
To this day, he suffers migraines, numbness and array of other debilitating conditions. Combine those with seemingly endless trips to conference and specialists, and it makes doing well in school and playing baseball more than challenging.
In a way, the Tutrows’ lives have become a whirlwind of surgeries, doctors and pills, especially after Kaylee was diagnosed a few months after Keegan.
Yet, despite their misfortune, the family has persevered.
And that’s the other message the Tutrows are intent on spreading: Chirai can be beat. If not physically, then mentally.
One of the keys to finding the emotional strength to overcoming this disorder is finding inspiration. For Keegan that has meant two things: God and baseball.
“I would have gone insane by now if it weren’t for my faith,” Keegan said. “Knowing that God has a plan makes the good days a lot better.”
As for baseball, it’s the reason Keegan gets out of bed in the morning.
“I’ll say this,” said Keegan, who has been playing since he was a toddler and was a catcher and outfielder on the Cougars’ JV team this past season. “I’d be a lot less likely to go to school and deal with the pain if it weren’t for baseball.”
Keegan’s positive outlook has been a source of strength for many at the support group meetings, Lori said. It’s also affected his coach.
“For him to say that about baseball, it gives me chills,” Greenfield-Central JV coach Harold Gibson said. “You know that’s why a lot of us are out here. It’s about more than the game. To be a part of something that helps a kid like him feel better, well it’s what the Lord would want.”
The goal for Keegan and his sister isn’t to be symptom-free anymore. At this point, Keegan said, that’s unrealistic. The best-case scenario is to keep the symptoms of his conditions from preventing him from enjoying a normal life.
“We just want him to be as functional as possible,” Lori said. “That starts with him going to (high) school every day. Then college. He wants to go to Purdue to study engineering. We want him to be able to do those things, to hold a job and have a family — all the normal stuff.”
Every good parent wants that for their kids, but is it doable for the Tutrows?
“It has to be,” Keegan said. “We’ll figure it out eventually.”
- Chiari malformation is diagnosed by MRI.
- Chiari is thought to be a birth defect, but it also can be procured later in life due to a number of conditions.
- Most cases of Chiari malformation are found in early adulthood, but recently children have been diagnosed more frequently due to increased awareness and better technology.
- Estimates are that Chiari malformation affects one in every 1,000 Americans, though some medical experts think it could be much higher due to undiagnosed cases.
- Doctors do not consider Chiari I malformation a fatal disorder.
- No all of those with Chiari must have surgery.
All information courtesy of the American Syringomyelia & Chiari Alliance Project (ASAP.org).
6th Annual ASAP Walk and Roll for a Cure
Indianapolis Area American Syringomyelia & Chiari Alliance support group leader Lori Tutrow plans to host the 6th Annual ASAP Walk and Roll for a Cure, however, the date is still undetermined.
As in previous years, registration and the all-you-can-eat pizza and drink event will be hosted at Hometown Classic Pizza in Greenfield. The walk again will be at the Pennsy Trail.
For more information, contact Tutrow at Lori_Tutrow@ASAP.org.