Five-year-old shows lots of heart through illness

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Gilby McMurray, 5, of Upper Township, has been on life support since December as a result of a heart condition. A fundraiser for the family is scheduled for Feb. 2 at the Seaville Fire Hall. Gilby McMurray, 5, of Upper Township, has been on life support since December as a result of a heart condition. A fundraiser for the family is scheduled for Feb. 2 at the Seaville Fire Hall.

UPPER TOWNSHIP – When he was just 10 days old, Gilby McMurray underwent lifesaving heart surgery. He spent his first two months of life in the Cardiac Intensive Care Unit (CICU) at Children’s Hospital of Philadelphia. At eight months old, he had another corrective heart procedure.

In October, Gilby, now a kindergarten student at the Upper Township Primary School, returned to Children’s Hospital of Philadelphia after a heart attack and stroke. He is now on a list for a heart transplant.

Through it all, Gilby’s parents, Steve and Kathleen Schroyer McMurray, have kept faith and repeat what friends tell them: “He’s got this.” 

McMurray started a Facebook page to keep friends and family updated about his son’s condition. He did the same thing for his older son, Liam, 13, who has undergone three heart surgeries. McMurray ends each update on Gilby’s page with “He’s got this.”

“That’s Gilby,” said McMurray. “This is his battle. He’s in control, he’s calling the shots. The doctor told him he’d have to have a heart transplant, and he said ‘no!’

“He’s so brave, so strong, he’s an absolute fighter. Pound for pound he’s a strong little boy and he’s working through it. Some days are better than others, we just keep on going.”

Gilby, 5, was born with a congenital defect in his heart known as Tetralogy of Fallot. The condition causes oxygen-poor blood to be pumped into the circulatory system.

On Monday, Gilby was awake and aware, according to his father. He’s been watching “Sponge Bob” and surf movies while keeping a sharp eye on his nurse and hospital staff that comes to visit.

On top of other ailments, Gilby recently suffered pneumonia. After spending weeks on life support through December, McMurray said his son is handling the pneumonia pretty well.

Gilby started kindergarten in September and was thriving under the tutelage of teacher, Jessica Keenan. In October, he went for a check-up with his cardiologist and the physician noticed something suspicious in an EKG.

“He had an aneurysm on his right ventricle in his heart,” said McMurray.

Following surgery in December to remove the aneurysm, Gilby suffered a heart attack and was placed on an ECMO, a life support machine, to move the blood through his body. When doctors tried to slowly wean him off of life support as he progressed, he started bleeding internally. He is now on a combination of vasopressor and inotropic drugs designed to help stabilize his blood pressure and heart rate, and has been placed on the list for a heart transplant. 

“His liver and kidneys took such a hit during the heart attack, he was placed on dialysis,” said McMurray.

The bleeding would not stop, he said.

“That was scary,” he said.

Gilby remains on dialysis, though his kidneys and liver have improved, McMurray said.

Last week, Gilby started opening his eyes and looking around, squeezing his parent’s hands. Meanwhile, he suffered a minor stroke on the right side of his brain, which has weakened the left side of his body. An MRI was scheduled for Tuesday to assess the damage. 

“Slow and steady we go,” said McMurray, in a phone interview from his son’s bedside at CHOP. “At one point, Gilby raised his left hand five inches in the air and moved his arm across his body, that’s awesome movement. That’s the most he’s moved his left side in over a month!”

Spending so much time at CHOP has taken a toll on the McMurray family. Steve, an Ocean City native and a 1988 Ocean City High School graduate, owns Great Egg Painting but has been unable to commit to a normal work schedule. Kathleen, a native of Sea Isle City and a 1990 OCHS graduate, works at the Heist Insurance Agency and has taken an indefinite leave of absence in order to stay with Gilby.

Gilby’s siblings, Liam and 15-year-old Erin, remain at home so the parents juggle a heavy load.

“It’s very, very difficult,” said McMurray. “When you’re at the hospital you’re worried about what’s happening at home, when you’re at home you’re worried about what’s happening at the hospital. If you’re not with Gilby, you dread hearing the phone ring. You’re on top of the world when things are going well, but it’s so hard when things are not.”

To help the family make ends meet, friends are hosting a benefit for Gilby from noon to 4 p.m. on Saturday, Feb. 2 at the Seaville Fire Hall on Rt. 50 in Seaville. While the event is sold out, donations are being accepted.

“So many people ask us, ‘how are you doing this?’” McMurray said. “How? You just get up and do it, you have to. It’s frightening, for sure. I wouldn’t want to be in anyone else’s shoes.

“Gilby’s a happy little kid, everybody loves him. He’s like the mayor. Everywhere he goes he steals everyone’s heart. Once you meet him, you realize that he has this wonderful little personality.”

McMurray said his family appreciates the outpouring of support they have received from the community.

“The Facebook page just exploded, people have been so kind and generous,” he said. Many have sent cards, and prayers, he said. Pastor Brian Roberts of St. Peter’s United Methodist Church asked the congregation to pray for Gilby, and drove to Philadelphia to visit him at CHOP. 

“We’ve been blessed,” he said. “Gilby does things on his own terms and he always comes out on top, and we have to just keep on praying and he’s going to keep on fighting.

“He’s got this,” McMurray said.

For more information or to donate, visit www.GilbyMcMurray.com.

 


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