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Kansas City,
28
March
2017

KC Star: First-of-its-kind family room celebrates 20 years at Children's Mercy

It was dark outside, but every bump and turn was familiar to Regina Taylor as she sat in the back of an ambulance with an ailing child in the early hours of Monday morning.

Taylor’s grand-niece, Ariya, was born with a serious liver condition called biliary atresia, which led to surgeries and a transplant and many trips from her home in Sedalia, Mo., to Children’s Mercy.

It was about 3 a.m. when Ariya got settled and stabilized in the hospital’s intensive care unit following her latest complications. An exhausted Taylor was finally able to lay her head down and rest, and she didn’t need to go far.

Just down the hall from the PICU, there’s a door that opens up to a Ronald McDonald House family room — a very unhospital-like space that includes a kitchen, dining area and seven sleeping rooms.

The rooms are reserved for the sickest patients’ family members, people who don’t want to stray even as far as one of Kansas City’s three freestanding Ronald McDonald Houses, but do need a break from the clamor and angst of the PICU.

“It gives me a chance to get away from the chatter,” Taylor said, “and it gives me a place to come and think differently. It’s a good thing. This room is a good thing.”

Ronald McDonald House now has more than 200 such spaces in hospitals around the world, but the idea started here, in Kansas City, and the first room is now 20 years old.

Dr. Bradley Warady, a longtime doctor in the hospital’s pediatric nephrology department, was president of the board of directors of Ronald McDonald House-Kansas City when the room was established. He said it wasn’t necessarily an easy sell to hospital administrators.

“There was a lot of discussion, let’s put it that way,” Dr. Warady said.

Hospitals need to make money, and the family room is hundreds of square feet within the hospital walls that generate costs but no revenue. Charity covers things like meals for the families, but the hospital picks up the cost of bed linens, utilities and cleaning.

But the pilot program in Kansas City proved that it’s something families overwhelmingly want. The room at Children’s Mercy hosted about 57,000 visits last year.

In addition to allowing family members to be no more than a call away, Dr. Warady said there are health benefits to the patients that are hard to quantify.

“While we can provide the medical support, they need the emotional support, which is equally or more important,” Dr. Warady said. “They get their most sincere emotional support from their families. That’s part of the therapy these kids need is to have their families close.”

Dr. Warady said allowing parents and caregivers a place to recharge makes them more able to give that support when their kids call on them.

Taylor said that’s true for her and Ariya, who is nonverbal but has a special bond with her great aunt that often makes words unnecessary.

“She’s kind of spoiled to me, and I’m kind of spoiled to her,” Taylor said. “We communicate. ... She’s my Princess Ariya, (and) I wouldn’t trade her.”