Strong Kids

Managing Transition with Care - Jacob Noyes

May. 17, 2019
Jacob Noyes at graduation ceremony

Wearing a graduation cap and a beaming smile, Jacob Noyes embraced a dozen nurses and doctors — who all knew him by name — in the teen lounge of Golisano Children’s Hospital.

“Jake, you’re here!” said Amber Cook, a child life specialist, as she gave him a hug. “We are going to miss you so much!” 

The team had gathered to celebrate Jake’s last stay at the hospital by holding a special graduation ceremony for him, complete with a cake and a special song prepared by music therapist Rosie Obi. The celebration was bittersweet ­—over the years, the hospital had become Jake’s second home.

Jake, now 20, was born with Down syndrome and a rare heart defect. He has faced countless health challenges, including more than 40 surgeries and procedures, and has been admitted to the hospital dozens of times.  But after he turned 18, his team knew that the time was coming for Jake to move on from pediatrics and into the adult world. His mom, Kerri, was apprehensive.

“It was nerve-wracking. At the children’s hospital, he knows everyone, and everyone knows him,” said Kerri. “We felt comfortable there because of everything they have done for him over the years.”

Her concerns were compounded by another health crisis in the spring of 2018. Every time Jake tried to swallow food, liquids, or saliva, he’d absorb it into his lungs, putting him at risk for life-threatening complications. To determine why this was happening, Jake’s care team consulted with Christian Peyre, M.D., an adult thoracic surgeon at UR Medicine, who was able to identify the problem and put Jake on an appropriate treatment plan.

 “Jake’s care team did a great job of slowly involving adult physicians, and that really eased the transition for us,” said Kerri. “Dr. Peyre was incredible and getting to know him and some of the other adult providers calmed my nerves.”

The next step in Jake’s “graduation” was a visit to the Complex Care Center, which serves adults with complex childhood onset conditions. Francis Coyne, M.D., a medicine/pediatric specialist, became Jake’s primary physician and managed his transition into adult services.

As part of that process, Coyne — with help from the teams at the children’s and adult hospitals — created a comprehensive care plan for Jake and began to manage all the communication between Jake’s specialists, from his cardiologist to his pulmonologist and his surgeons. Jake and his family were also able to go on a tour of the adult unit of Strong Memorial Hospital, thanks to the efforts of Megan Train, D.O.

“It’s a team effort to care for patients like Jake and help make their transition to the next phase of their medical lives as smooth as possible,” said Coyne. “Years ago, many children with chronic diseases weren’t living into adulthood. Now, thanks to medical advances, they are, and as a result, we’ve had to create a new system for how to best give patients the care they need as they ‘move up’ to the adult world.”

Earlier this summer, Jake faced another serious complication, and Coyne was on the phone with Kerri every night, monitoring the situation and communicating with other specialists to get their input. Luckily, Jake was able to stay out of the hospital.

But if he does have to be admitted, the team will aim to have Jake admitted on the sixth floor at Strong Memorial Hospital, where doctors receive training in caring for both children and adults. The team there also makes an effort to give Jake a private room, since Kerri stays overnight with him when he’s in the hospital.

For now, Jake is healthy and he’s ecstatic to be back at school. As for Kerri, the transition has gone much smoother than she initially expected.

“I’ve gone to bat for Jake for a really long time, but to have a doctor like Dr. Coyne really advocating for him — it’s huge,” said Kerri. “The Complex Care Center is working hard to ease the transition between pediatrics and the adult world, and because of them, I feel confident that Jake will get the best care possible.”