Jameson’s Army helps families of children with heart defects

02 Mar Jameson’s Army helps families of children with heart defects

Jameson and Danielle

It’s been two years since Danielle McKain and her son, Jameson, moved out of Children’s Hospital of Pittsburgh, UPMC.

Jameson, now 4, is home and happy with a heart transplant, but, in many ways, Danielle McKain hasn’t left the hospital.

With the help of her son, Colin, husband, Patrik, and many dedicated friends and volunteers, she launched “Jameson’s Army,” a non-profit dedicated to helping families of children in the cardiac care unit at Children’s Hospital of Pittsburgh, which is part of UPMC. She and her husband’s experiences with the hospital and her son’s ongoing care have helped her remain current and understand the needs of families of children who are afflicted with heart issues.

She recalls her years “living” in the hospital with great detail and one question triggers her to describe the two-year experience of living at the bedside of her infant son who was born with only half of a heart.

About Eating

Danielle McKain with her two sons: Colin left and Jameson right; her husband, Patrik. And, of course, Santa.

“I couldn’t get away to the cafeteria and wait in line. To be away from his bedside for more than 20 minutes, I couldn’t do it.”

Her family brought her food or ordered meals delivered to her room. “I was so lucky to have family who live close to the hospital. My brother would bring me whatever my mother made for dinner.”

She said Patrik would also order her meals to be delivered to the hospital.

About Sleeping

She slept in a reclining chair or sometimes in a straight chair. She learned to nap and grab pockets of sleep in small increments.
“When he sleeps, you want to sleep because you haven’t slept in two years.”

About bathing and doing laundry:

She didn’t like to leave his room unless someone else was there sitting with him. So she only showered and did laundry in the machines at the hospital every four to five days. But doing laundry was tough until she learned to have someone bring her special detergent that is appropriate for babies to touch.

Jameson’s Army supplies food and games for families and children receiving cardiac care at Children’s Hospital Pittsburgh, UPMC.

“You don’t want to go and spend $10 for a small box of Wisk at the gift store and that’s what they sold.”

About holidays:

She said she dreaded her first Thanksgiving in the hospital. “It’s my favorite holiday and I thought, ‘geeze, I can’t believe we have to spend it here.’”

She was sitting in her son’s room when her mom and entire family came in with an entire Thanksgiving dinner.

They were able to use a conference room and wheel Jameson’s bed into the room with them to have a family dinner.

At some point, she had to take Jameson back to the room and as they walked the hallway, Danielle said she noticed “people eating chicken nuggets.”

“I get my mom’s homemade stuffing and these people are eating chicken nuggets.”

About her mission:

It was the sight of people eating chicken nuggets alone on Thanksgiving that sparked her desire to help other families of children with congenital heart defects.

“I was lucky because I live in the area, but there are other families who aren’t from here,” she said.

And there were other reasons why she considered herself lucky:

• She didn’t have to go back to work and could stay at the hospital.
• Her husband, Patrik, was able to go back to work but care for their older son, Colin.
• Although her home is about an hour from the hospital, her parents live only 10 minutes from it.
• Her friends brought her clothes, food and anything she requested.

“The bottom line is I got so much assistance while I was there from friends and neighbors,” she said.

The people who live in her small neighborhood of 400 raised $10,000 for them to help with medical and other expenses.

“I was overwhelmed by this and it came to my attention just from living there so long that there are so many families that don’t have this,” she said.

She took her experience and figured out how to start offering that type of support and help to other families.

Jameson’s Army – Reporting for Duty

The non-profit was named Jameson’s Army because that’s what how her friends and family referred to themselves during the hospitalization. “I would send weekly updates out to everyone and they would respond back to me that they were there for Jameson and that he was such a soldier and that they were his Army,” she said.

With Covelli Enterprises as the organization’s first-ever sponsor and partner and picking up all expenses, Jameson’s Army delivers food once a month to the staff and families who are at the cardiac care unit at Pittsburgh Children’s Hospital. “Panera was the first company to ever approach me about a sponsorship. I am not even sure how they heard about us. Word-of-mouth, I guess,” she said.

The organization also buys items that families need and delivers them to the hospital, including quality laundry detergent, toothbrushes, toiletries, therapeutic heart cough pillows, food drops, rocking chairs for newborns, refrigerators for patient privacy and gifts to each child going into the heart cath lab.

Jameson’s Army provides meals for families and staff on holidays and at least four times per year. “I insist that we use real dishes and table cloths and real silverware – as if you were at home.”

The organization’s annual budget is about $100,000 and in its three years of existence, it has raised over $350,000 to fund its operations.

Danielle credits her board with having foresight and direction. “The best decision I made was when I selected my board. I thought about who would be most beneficial to make it a success. They are the most amazing, hard-working group ever.”

Danielle is also grateful to her husband and son. “They’re incredibly supportive,” she said.

Jameson’s Journey

Danielle and Patrik McKain knew that Jameson was going to be born with a heart defect when Danielle was just 18 weeks pregnant. His condition is known as Hypo Plastic Left Heart Syndrome and literally means that only half of his heart was there.

The couple discovered this long before he was born and had time to prepare.

Within five minutes of his birth, Jameson and his father were taken away from Danielle and moved to Children’s Hospital of Pittsburgh UPMC.

“It was not the fairy tale way it was supposed to be,” she said.

After six open-heart surgeries and years of living in a hospital, Jameson received a heart transplant and is now thriving as a 4 year-old who likes to play cars, his best friend and big brother, Colin and the Pittsburgh Pirates!

Danielle said she and Patrik have accepted that Jameson is a chronically ill child who needs ongoing medical care.

For more about Jameson’s Army or to donate, please visit: http://www.jamesonsarmy.org/