Heart defects aren’t stopping this Richland toddler as he waits for a transplant in Seattle
The Richland mother of Jayce Marzyck describes her toddler as spunky, fun, loud and energetic.
He “tries not to let heart failure slow him down,” she said. “He’s a let-you-know-I’m-here kid.”
Jayce, who turns 18 months old on Monday, is at Seattle Children’s Hospital waiting for a heart transplant.
His family — mom Hailey Smith, dad Jered Marzyck and a brother who just started second grade — have all moved temporarily from Richland to Seattle to wait with Jayce after he was put on the heart transplant list at the end of August.
Jayce was born prematurely with two heart defects.
At five months he had a pacemaker implanted and was able to spend the next 10 months at home in Richland.
But it was not a permanent solution.
By July of this year he was back in heart failure and was sent by air ambulance for specialist treatment at Sacred Heart Children’s Hospital in Spokane.
He was stabilized and returned home, with pills to maintain his health.
Heart transplant needed
But within four days he was so tired that when he crawled he dragged his head on the floor, Smith said.
A heart transplant was determined to be his only option, and he must remain at Seattle Children’s, receiving multiple intravenous medications, until a heart becomes available for him.
His family is hoping it is within the next 18 months.
His mother wrote on a Facebook blog that because of “how extremely poor his heart function is,” he’s listed at the highest level of need on the waiting list.
Jayce was born with a complete heart blockage. The upper half of his heart has no communication with the lower half, as his mother describes it.
In addition, he was born with a rare condition called “congenitally corrected transposition of the great arteries.”
His ventricles are backward, with the smaller right ventricle trying to do the work of pumping blood into his circulation system rather than the larger left ventricle.
He has about 10 percent of normal heart function, Smith said.
The conversations that she and Jayce’s father had with medical specialists at Children’s “have been intense, heartbreaking and eye opening — conversations that I wish no parent to ever experience,” she wrote on social media.
Charming the hospital nurses
“Living this life is like living in another dimension you never knew existed, but it is worth it,” she said.
Both Smith and Marzyck left their jobs in the Tri-Cities for the temporary move to Seattle, and so far Marzyck has found some side jobs that he’s hoping will turn into permanent work.
Jayce is doing reasonably well at Children’s. His weight reached a high point of 20 pounds on Sept. 8, thanks to help from an appetite stimulant.
He’s since slipped back to 19 pounds, but he’s generally maintaining his weight.
“Keeping a toddler entertained in a hospital room can be a challenge,” his mother posted to social media. Jayce has been known to snap the tubing for his intravenous meds as he twists and turns.
He can be busy one day and exhausted the next, his mom says.
He’s turning out to be something of a favorite for the nurses, who sometimes stop by in their time off to play with him, Smith said.
Pictures show a frequently grinning child among the medical equipment that keeps him alive. His face radiates glee and excitement when a family member walks into the room.
To help his family with the expenses of living in Seattle, fundraisers are planned this Saturday at the Tin Hat Tavern, 425 E. Bruneau Ave., Kennewick.
A fun run, with all vehicles welcome, starts with registration at 10 a.m. Cost is $10.
A barbecue starts at 4 p.m. with the Vaughn Jensen Band playing. Cost is $15, or $20 for both the barbecue and fun run.
A GoFundMe account called “Jayce’s Healing Heart” also has been set up with the goal of raising $40,000 to help the family pay living expenses for 18 months in Seattle. So far it has raised about $6,500.
This story was originally published September 27, 2019 at 6:50 PM.