Ryan Hayes has been hospitalized since February after contracting influenza B. He’s fought for his life — losing 48 pounds during his time in intensive care. One his favorite therapy activities is making lasagna that he gets to eat it!
When 16-year-old Ryan Hayes left for a school trip to Chicago with the Firestone High School choir on Valentine’s Day he was feeling fine. Three days later he was in the Akron Children’s emergency department barely able to breathe. Somewhere along the line Ryan had contracted influenza B that left him gravely ill and in the hospital’s pediatric intensive care unit (PICU) on a life support system called ECMO (extracorporeal membrane oxygenation).
ECMO does the work of the heart and lungs by providing oxygen, ventilation and circulation for patients who are in respiratory failure, cardiac failure or both. And, according to Dr. Patricia Raimer, medical director of the Pediatric ECMO program, it is used in patients who are critically ill, but have reversible disease.
“ECMO is a last resort when you have escalated all medical support, but the patient is still in organ failure,” she said. “The key factor is if you think the patient’s condition can be reversed. Ryan was on blood pressure medicines and a ventilator. We had maxed out the amount of therapies we could do and he wasn’t showing improvement. Without ECMO, he likely would have died.”
Ryan’s case drives home the point of why it was so important for Akron Children’s to have its own ECMO program, which was developed by a multi-disciplinary team of people led by Dr. Raimer. She joined the hospital in January 2016 and was brought here specifically to build the PICU’s ECMO program. Previously she was ECMO director at Cleveland Clinic Children’s Hospital.
“This was my first experience starting a program from scratch,” she said. “I helped design the policies and procedures, build and design the ECMO circuit and train the doctors, nurses and respiratory therapists.”
It was very important to Dr. Raimer to have a way to improve the fluid balance of kids who are on ECMO so she worked with Dr. Shefali Mahesh, division director of Pediatric Nephrology, to figure out a safe way to plug dialysis into the ECMO circuit.
“Lungs do worse when they are overloaded with fluid and it increases a patient’s mortality,” Dr. Raimer said.
ECMO isn’t without risks and Dr. Raimer and the ECMO team (which includes Dr. Ryan Nofziger, Dr. Sarah Steward, Dr. Christopher Page-Goertz and clinical coordinator Colleen Cooper and nurse practitioner Beth Forst) weigh the risks vs. benefits with every case.
“Kids on ECMO are at higher risk for bleeding, infection, seizures and stroke so they are watched 24/7 by specially trained perfusionists who monitor vital signs, pain, fluid balance and blood thinners,” said Dr. Raimer.
There are 2 kinds of ECMO – veno/venous which offers lung support only and venous/arterial which offers lung and cardiac support.
“In Ryan’s case his pneumonia was so significant he needed both heart and lung support,” she said. “The way ECMO works is the surgical team places plastic tubes called cannulas into a main vein and main artery. Ryan had cannulas placed in his jugular vein and carotid artery in his neck. The tubes drained his blood – removing carbon dioxide and oxygenating the blood – before returning it to his body which allowed his lungs to rest.”
Dr. Michael Bigham, chief quality officer, says getting an ECMO program in the PICU was a priority for the hospital.
“Dr. Raimer has been such a champion for the ECMO program, she’s truly an inspirational and committed leader,” he said. “The ECMO program is a very real demonstration of the hospital’s commitment to invest in people, processes and programs designed to deliver high-quality care for the patients we’ve been entrusted to care for.”
“We talk a lot about quality and safety issues and participate in ELSO (Extracorporeal Life Support Organization) which collects data from all the ECMO programs nationally so we can learn from each other and track the positives and negatives,” said Dr. Raimer.
Most ECMO programs only do a handful of cases a year, but it is patients like Ryan who make it all worthwhile for Dr. Raimer and the ECMO team.
“Ryan was on ECMO for 8 days,” she said. “Once we saw an improvement in his chest X-rays and saw him taking bigger breaths on the ventilator, we knew we could wean him off of ECMO support.”
Ryan was transferred from the PICU to the inpatient rehabilitation floor on April 13 – which also happens to be Dr. Raimer’s birthday. He receives daily physical and occupational therapy to help him regain his muscle function and relearn activities of daily living. His goal was to take one step before his 16th birthday on June 18 and he did.
Ryan said regarding his therapy, “One step closer to one step!”
The Hayes family remains deeply grateful to Dr. Raimer and the ECMO team.
“We are thankful for their vision in getting this program established so it could benefit our son,” said Ryan’s parents, John and Gwen.
“Ryan is a testament to why this hospital needed an ECMO program in the PICU,” said Dr. Raimer. “Before we would have had to transfer him to another hospital and hope he survived the transport. With as sick as he was he wouldn’t be here today without all the teams of people who played a role in getting him to this point.”