Boy thriving one year after doctor found device allergy

When Stephanie Kenning and her family arrived in Hershey from Minnesota in August 2021, they were treating it as their last full family vacation.

Her son Coltin has suffered from a variety of medical conditions since his birth, but he had spent the previous 3 ½ years in and out of surgery addressing wounds that didn’t seem to heal.

With doctors unable to identify the cause and only repeating the same surgery, Kenning wanted her son to experience life outside.

But they never made it to Hersheypark.

The morning after they arrived, Kenning took Coltin to the emergency room in an unfamiliar state with many people believing he would never make it out of the hospital.

“We were in a pretty dark place,” Kenning said. “We were told he was never going to walk out of there alive. There was not one person who thought we’d be sitting here.”

“Here” is a house in Newville, Cumberland County, where her children now attend Big Spring School District and Coltin, 12, plays baseball and generally enjoys life outside the hospital.

“In the last nine months, he’s doing things he’s never done his entire life,” Kenning said. “The life he has right now is way better than what we had. It allowed him to be out of the hospital.”

The reason for this change is Dr. Elias Rizk.

The pediatric neurosurgeon at Penn State Health Children’s Hospital was the one who identified Coltin’s silicone allergy and is the person the family said tirelessly worked on their behalf to get an alternative for the silicone shunt Coltin needed to manage his hydrocephalus.

On the one year anniversary of Coltin’s new shunt — and the last surgery he’s had for a year — the family on Wednesday presented a $23,550 donation to Penn State Health Milton S. Hershey Medical Center in honor of Rizk and earmarked for hydrocephalus research.

Kenning said her family started a raffle with the goal of $10,000. But the Newville and Carlisle area community, as well as her hometown community in Minnesota where her husband and oldest son still work their family farm, came together to surpass that goal.

“The American Legion, Sertoma Club and auxiliary donated larger amounts, but it was mostly raised through the raffle and contribution boxes,” Kenning said. “Dr. Rizk’s colleagues at Hershey donated money. It was well worth it. It’s unbelievable.”

Hydrocephalus and Coltin’s journey

According to the Mayo Clinic, hydrocephalus is the buildup of fluid in the ventricles deep within the brain, and a shunt acts as a drainage system to offset that buildup.

Though hydrocephalus is a complex illness, Kenning said there have been few modern advancements in treatment and in the production of shunts.

“These shunts have been used for over 50 years,” she said. “There’s been no advancements, no change.

We hope with this money, Dr. Rizk could do more research, help find a silicone-free shunt for Coltin and other children like him in the future.”

With Coltin’s allergy to silicone, there were few options on the table for Rizk and his staff. Some options they attempted early on failed.

Kenning said, however, that Rizk didn’t give up. Even after being rejected by three companies that produce shunts, he contacted Medtronic again, which eventually worked with him on an alternative. A different alternative didn’t work, but after five weeks Medtronic was able to produce a shunt with a specialty coating specifically for Coltin’s case.

The shunt has given Coltin new life, but it’s not a permanent solution. Coltin must still take anti-rejection medication usually used for transplant patients to help him tolerate the shunt. They attempted to take him off the medication in June, but his wounds started reopening and Coltin was placed back on the medication regimen.

But this medication comes with liver and kidney failure dangers, and weakens his immune system. For Kenning, though, the temporary solution has meant that Coltin could leave the hospital, and he even made it to the beach. It means she gets more time with her son.

“Even when we woke up this morning, it doesn’t seem real,” Kenning said. “I’m just so glad I get to watch him wake up and smile and be a child. There’s nothing I could give in this world that could pay him back.”