Austin Coultes loves a good fantasy.
He has battled dementors with Harry Potter, fought through the Hunger Games with Katniss Everdeen and traveled to the Underworld with Percy Jackson.
But no gripping novel can match the real-life medical mystery that Austin has faced—and overcome.
If this were a novel, we would call it Austin’s Quest.
And Austin, of course, would be the hero.
He is a 12-year-old boy who aims to become an astronomer someday. Or a biologist. Or a doctor. Who knows, maybe all three.
In the summer, he swims, fishes, canoes and rides a dirt bike. In the winter, he skis.
He plays with his brothers and sisters and takes care of his family cat, dog, chickens and milk cow.
And Austin reads—a good story sets his imagination on fire.
But for Austin, challenging quests belonged to the realm of fiction, not real life.
That changed when a splitting headache struck one day.
First, a little backstory about Austin:
He was born with a rare condition called Dandy Walker malformation, which affects the development of the cerebellum. The condition involves enlargement of the back compartment of the brain and the formation of a large cyst in the fourth ventricle.
This affects the flow of cerebrospinal fluid from the brain down the spinal cord, creating a condition called hydrocephalus.
To prevent a build-up of fluid in Austin’s brain, he underwent surgery at 3 months old. A pediatric neurosurgeon at Spectrum Helen DeVos Children’s Hospital placed a shunt, made of soft flexible tubing, into his brain to allow excess fluid to drain.
The shunt did its job for nine years, and Austin thrived.
He enjoyed life at his two homes in northern Michigan.
With his mom and stepdad, Adrianna and Travis Park, Austin lives in a home in the country outside Lake City. The family includes two younger siblings, Egwaine, 3, and Asher, 1.
Austin also has a home in East Jordan, where he lives with his dad and stepmom, Doug and Katie Coultes, and four siblings, Katelynn, 12, Noah, 11, Peyton, 9, and Brooke, 7.
One spring day in 2018 when Austin was 9 years old, he developed a severe headache. The pain grew so intense, he vomited.
He passed out, striking his head on the bathroom floor.
His parents rushed him to a local hospital.
Soon, Austin was in a Spectrum Health Aero Med helicopter, making an emergency trip to Helen DeVos Children’s Hospital.
His doctors determined the brain shunt had failed, causing a painful and dangerous build-up of fluid in his skull.
A challenging time
That was the beginning of Austin’s 20-month medical journey.
In the following months, he underwent repeated brain surgeries to implant a new shunt.
But each time after surgery, the incisions in his scalp and torso opened, indicating a possible infection.
“Infections and shunts don’t go well together. Every time you have an infected shunt, you have to remove the entire shunt,” said pediatric neurosurgeon Michael Bercu, MD.
Dr. Bercu met Austin after he had undergone more than a dozen surgeries on his brain. In the story of Austin’s Quest, Dr. Bercu became a kind of medical guardian, examining each step of the process to identify the problem—and the solution.
“He would be OK for two to four weeks after a procedure,” Dr. Bercu said. “All of a sudden, the incision would open.”
After surgeons removed the shunt, Austin had to wait several weeks before undergoing surgery again.
In that time, he had an external ventricular drain—a tube that led from his skull to a bag on an IV pole—to drain excess fluid.
Life with the external drain is challenging for an active kid, Dr. Bercu said.
“It’s basically your best friend. You take this pole with you everywhere—to the bathroom, to your activities,” he said. “Your life depends on it.”
In 20 months, Austin underwent 25 brain surgeries.
He celebrated nearly every holiday at the hospital. The longest stretch he spent at home was two months. The shortest was just one day.
‘He was my rock’
In those circumstances, Dr. Bercu would understand if Austin felt angry, frustrated or sad.
And yet when he entered Austin’s room, he met a boy who was happy and curious, asking questions and telling stories.
“He has a very vivid imagination. His brain is always working,” Dr. Bercu said. “I think that was very helpful in terms of helping him cope with the situation.”
For physicians facing challenging cases, “Austin is the perfect example of the patient who gives you strength,” Dr. Bercu said.
“He really is an amazing kid. He never complained. He was never down. He was such a graceful patient.”
How did he keep up his spirits? Austin said he had a secret weapon: Kindness.
He credits the kindness of everyone at the hospital—including Child Life specialists, doctors and nurses—with helping him to stay positive.
“The people were just so nice,” he said. “No matter what, I knew at least there were people that were taking care of me and really trying to help.”
Austin became a familiar face at the holiday parties and events at Helen DeVos Children’s Hospital, along with his sister Egwaine. He attended the Halloween party two years in a row, once dressed as Pikachu and once as Ash Ketchum.
He looked forward to visits from the pet therapy dogs and a miniature horse.
Austin’s mom marveled at her son’s positive attitude.
“That’s what kept me going through it all,” Adrianna said. “He was my rock.
“I just have to say God was the one who was giving him his strength. I don’t know where else it could have come from.”
Finding a solution for Austin involved a vast team of medical experts. Dr. Bercu and his team consulted other pediatric physicians who specialize in allergies and infectious disease.
They found no allergies to the materials in the shunt or threads used in the sutures.
Dr. Bercu tried using different tubing when he placed the shunt. But an infection occurred.
Other procedures intended to create alternative pathways through the brain and improve the flow of the spinal fluid failed, as well.
“We started from zero again,” Dr. Bercu said.
He placed a new shunt in Austin’s brain.
During surgery for a shunt, several types of sutures are used. Dr. Bercu, together with a dedicated pediatric neurosurgery team, decided to do an extra test to see if Austin had a reaction to them. They placed a few stitches, using a variety of threads, on the underside of Austin’s forearm.
Typically, an allergic reaction appears within 48 hours. No signs of irritation appeared on Austin’s arm.
Austin went home from the hospital, with the shunt working well.
About four weeks later, a familiar problem occurred: The incision reopened.
When Dr. Bercu examined Austin in the hospital, he noticed a dime-sized red spot on his arm.
The skin irritation occurred in an area where he had placed test stitches using a silk thread.
Dr. Bercu believed it held a clue to the mystery. The silk thread is used in one place during the placement of a shunt—to connect the shunt to the tube that drains into the belly.
“Then it made sense,” Dr. Bercu said. “His problems were only over the incisions that were over that stitch.”
He placed a new shunt in Austin’s brain, this time without using the silk thread.
The incision healed fully, with no sign of infection.
But alas for Austin, another big chapter remained.
A valve in the shunt stopped working over his winter break. That meant he had to spend Christmas in the hospital.
He underwent his 25th surgery on Dec. 25, 2019, as Dr. Bercu placed a new shunt in his brain.
Austin went home in early January 2020.
Because of damage to a nerve near his eye, he wore a patch on one eye for a while as he regained the ability to control the movement of his eye. Eventually, he was able to say goodbye to the patch.
And he and his family are happy to report he has not been back to the hospital since then.
Back home, in school
Soon after Austin returned home, the COVID-19 pandemic began.
But even amid the social distancing, event cancellations and closings, Austin found plenty of ways to celebrate his life at home.
He played outdoors with friends and siblings.
He learned to paddle a canoe. He built a tree fort with his dad.
And when school started, he went back to East Jordan Elementary for sixth grade.
Science is his favorite subject. But the best part of school is seeing his friends.
Before the pandemic, Adrianna planned to take Austin to the Michigan Renaissance Festival—to celebrate all he had overcome.
With the fall event canceled, the family hosted their own Renaissance celebration at home. The family all dressed in costume, including baby Asher as a dragon and Egwaine as a princess.
Austin dressed as a knight, befitting his valiant victory. For his shield, he decorated a round piece of cardboard with an intricate drawing of a dragon in blue, black and purple.
A new chapter has begun for Austin. What does he want to see happen next?
“Just having fun and living my life,” he said.