The first few months of Jameson McKain’s life were a blur to his mother. Between living at Children’s Hospital of Pittsburgh of UPMC with her critically ill baby while helping her husband keep life normal for their 3-year old, Colin, it was difficult for the Cecil mother.
“It was day to day, but we had so much support from friends and family,” Danielle McKain said.
Mrs. McKain and her husband, Patrik, were excited for their second child, but on a routine sonogram when she was 18 weeks pregnant with Jameson, the couple received bad news. Jameson had only two chambers in his tiny heart instead of four. The diagnosis was hyperplastic left heart syndrome.
“Basically, you are born without a left side to your heart. There is no known reason, and you can’t live without a heart transplant,” Mrs. McKain said.
Jameson was born on Sept. 27, 2010, at West Penn Hospital and was rushed to Children’s. Mr. McKain accompanied the baby while Mrs. McKain had to remain at the hospital for two days. After that, she rarely left his side.
The original plan for Jameson was an open heart procedure to create a bypass so he could live until a heart became available. Jameson had surgery at 5 days old and everything went well until at 22 days old, he developed bacterial meningitis. The doctors pumped his body full of antibiotics until he became stronger. A second surgery in December failed.
“They then did his third and fourth open heart surgery in a week. My parents lived nearby and did everything for me. They brought us food, they brought me clothes, they kept us going,” Mrs. McKain said of her parents, Denise and Mark Muehlbauer of Carrick.
At that point, the doctors weren’t sure much more could be done for Jameson, and the McKains prepared themselves for the worst.
“He was so sick and tiny. We just prayed,” she said. But Jameson started gaining weight, and when he was 8 months old, he was well enough to be put on the transplant list. Four months later, Jameson received a new heart.
“One minute you know your kid is going to live, but you also know another mother is grieving the loss of her child. It is such an emotional time,” Mrs. McKain said.
Jameson was immediately healthier, but there were still complications. A few months later, he was having a hard time breathing. Doctors realized his new heart was pushing on his airway, and they had to operate for a sixth time. The couple was devastated.
Mrs. McKain packed, getting ready to move back to the hospital.
“I packed for six months, but he was only in for 10 days. The difference was he now had a good heart in. He came through the surgery like a rock star,” she said.
But her experiences over those first months of Jameson’s life got Mrs. McKain thinking.
“It really opened my eyes. We never could have done it without our families and friends. But what about parents who didn’t have support?” Mrs. McKain said.
While the McKains had been stationed at Children’s, her parents had brought holiday meals to them. She decided to return the favor by taking Thanksgiving dinner to the families at the hospital in 2011. Mrs. McKain found a caterer and soon others were volunteering to help. It was an opportunity to help others and create awareness about HLHS, Mrs. McKain decided.
In January 2012, the McKains filed for nonprofit status for Jameson’s Army, an organization that would assist other families at the cardiac unit at Children’s. Donations began rolling in and they started hosting fundraisers. Their three main fundraisers are the Green Heart Gala held in April, the Shamrock Shuffle, a 5K held in Cecil and the Golfing Fore Hearts Outing in September.
Smaller events such as an upcoming Murder Mystery Dinner to be held next Friday also help raise funds. Since the beginning of its efforts, the organization has raised more than $500,000.
The money is used in a variety of ways. The organization rents and stocks a storage space on the floor with coffeemakers and supplies, bottled water, nonperishable food items and other supplies parents may need on a daily basis. They also take the staff on the floor to lunch once a month.
“Without them, our kids wouldn’t be alive,” Ms. McKain said.
And of course, they also host the “real holiday dinners.”
“We get linen table cloths, real silverware, flower centerpieces – we want to make it as nice as possible for the families,” she said.
Jameson’s Army also helps by purchasing items requested by the hospital. They purchased 300 therapeutic heart pillows children can hold when they cough to help support their sternums and little teddy bears the staff hands out to children in the heart cath lab.
“They see five to six children a day. They tell them the bear will bring them good luck and it is reassuring for them, holding a bear until they are with their parents again,” she said.
The organization also helps with donations for gasoline, parking costs, groceries and other needs.
For people like Laura Fisk, Jameson’s Army is a lifesaver. The Fisks lived in Buffalo, N.Y., when they had to travel to Pittsburgh for their son’s heart transplant in 2012. Nolan had just turned 1.
“We were completely away from our family and friends. Danielle came and supported us in ways our families couldn’t,” she said. The Fisks, who now live in Bellevue, received meals from the organization and once, Mrs. McKain did something Mrs. Fisk never expected.
“She picked me up and took me to get my hair done. She made me feel normal and forget for a short time that we were living at the hospital,” she said.
Both Jameson and Nolan Fisk are doing well, but both will always be under strict doctor’s supervision. But for those like the Fisks, Jameson’s Army will help make the journey a bit easier.
“We just want to help a family that is hurting. We want to provide them with some comfort,” Mrs. McKain said.
Kathleen Ganster, freelance writer: suburbanliving@post-gazette.com.
First Published: October 16, 2015, 4:00 a.m.