December 08, 2011

Child Life Program provides comfort to families year-round

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The stories are alternately heart-wrenching and uplifting, and Jane Love and Blair Couvillion — the coordinator and specialist in UAB’s Child Life Program — have enough of them to fill a book.

Through UAB’s Child Life Program, Blair Couvillion (left) and Jane Love provide children and their families two things — comfort in times of need, and positive, even cherished, memories in times of turmoil.

There is the child who came in for heart surgery, but her parents told her she was coming to the hospital for a procedure on her mouth. That led to a great deal of discussion between the staff and the family on the importance of being honest about the child’s care, so when she woke up, she wouldn’t wonder why her chest was sore and a tube was in her throat.

There is a boy who had surgery on his leg and wasn’t going to be able to walk for a while. Love and Couvillion convinced the doctor to write a prescription for a red wagon, which he received as a gift to take home when he left the hospital.

Then there is the family with a child so sick that it was clear he would not live long. The boy felt safest when he was tucked into a wagon, and Love and Couvillion encouraged the family to take a wagon they had home with them. The family promised they would bring it back despite Love telling them to keep it.

“They brought back the wagon with a story,” Love says. “Some of the last few days their son lived, they pulled him around the neighborhood in that wagon so he could say good-bye to all of the children.”

Through UAB’s Child Life Program, Love and Couvillion provide children and their families two things — comfort in times of need and positive, even cherished, memories in times of turmoil.

The program, founded in 1975 by pediatric cardiologist Lionel (Mac) Bargeron, M.D., has been creating special bonds and memories with families since its inception. Bargeron believed this type of therapy was important for families.

Love has been a part of the program for almost 26 years. One reason it has been able to provide high-touch care is because of the support of UAB Hospital Maintenance, which raises money to provide gifts for the children in the program to be given out during the Christmas holidays and all year long.

This is the 30th year Hospital Maintenance has held its annual fundraiser for the program; it also will host the annual Christmas Toy Fund celebration at 11 a.m. Tuesday, Dec. 20 in the West Pavilion atrium. The event is open to all UAB employees.

 “There’s just no way to measure all that the maintenance department has done for all of the children we’ve seen here through the years,” Love says. “The things we do and the kind of environment we provide for them here would not be possible without their help.”

Play kitchens, doll houses, video-game systems, movies, rattles, dolls, highchairs — everything that could be needed from infants to teenagers is purchased with the money raised by Hospital Maintenance each year and given to the program at the annual Christmas Toy Fund celebration. The toys are used year-round in the rooms. And if patients become attached to a toy during their stay, it’s not uncommon for them to take the item home.

“Hospital Maintenance actually tells us if a child gets attached to something that they bought for the playroom, send it home with them,” Couvillion says. “Little things like that can make a tremendous difference.”

More than toys

Child Life specialists like Love and Couvillion are called to do great tasks. They are essential in implementing foundations for child development at a time when both the children and the parents are most fearful and stressed.

The program, which cares for hundreds of children at UAB every year, reduces the stress experienced by children and families and helps them cope with potentially traumatic situations.

Most of the patients Love and Couvillion see are here because of congenital heart defects. Children also are here waiting for heart, liver and kidney transplants. Doctors and nurses from other areas of the hospital also call and ask for their services. The nature of the diseases these children are battling leads to some tough and sometimes scary moments for patients and their families.

Child Life specialists take time with the patients and their family members to explain procedures. There are dolls on the floor that Couvillion can use to help explain things to a young child, a parent or even a concerned sibling so they know what to expect.

Providing families a caring touch is Child Life’s specialty. Love and Couvillion have degrees in human development and family studies. They’ve taken courses on death and dying and support families in the hospital during that time with palliative care, and they also had to pass a certification exam.

Yet Love and Couvillion says their success is rooted in relationships with nurses, nurse practitioners and doctors.

“We have a really good team around us,” Couvillion says. “Everyone is pulling in the same direction and really trying to do the best they can for these children and their families.”

Cementing relationships

Connecting with families can happen in an instant — often in the worst of circumstances — and it makes memories that affect all involved for a lifetime. And it oftentimes leads to more stories.

For instance, a social worker called Love just two weeks ago and told her, “You’re not going to believe who is here.” When she told Love the name of the family, memories from two years ago came flooding back.

In 2009, the family came in for a procedure on their 8-week old baby boy, and the child coded and died from complications brought on by a heart defect. Love and Couvillion were called when it was evident the baby was not going to make it. Love went with the doctor when he told the family things didn’t look good, and she stayed with them all day — even as the family gave their son his last bath, took photos of him and picked him up from the morgue.

Couvillion, meanwhile, had taken the family’s 5-year-old daughter with her to the Child Life rooms. The two of them bonded instantly. They played games, ate snacks, played with Barbies — even watched a Barbie movie — and they talked a little bit.

Two weeks ago, the family had returned to UAB Hospital, which prompted the social worker’s call to Love. The mom went into labor the day before she was scheduled to have a C-section here and was rushed to UAB from South Alabama. The mom had been told she would need to have her C-section at UAB because the baby she was carrying had the same heart defect that led to the death of her son two years earlier.

The mom delivered the baby girl without complications, and the ensuing echo-cardiogram astonished everyone — there was nothing wrong with the baby’s heart. She was 100 percent healthy.

Love visited with the family in the hospital, and they were grateful she stopped by. In fact, the oldest daughter — now 7 — walked with Love back to the Child Life unit with a couple of her friends just to visit.

Upon entering the unit, the little girl told Love, “My baby was in a room over here close by,” remembering her baby brother.

“I even got some things for her to play with and she looked around and asked, ‘Where are the Barbies,’” Love says. “She remembered that day two years ago. It just reinforced that that day with her and Blair was so important. It would not have been the kind of memory that it was for her if she had had to stay in that room with her parents for hours. She could not have come back here and had such a fond memory.”

Love shares that family’s story often because of the impact it had on everyone, including Couvillion, who was 22 weeks pregnant at the time.

“We can say how we would be in a situation, but the reality is, we really don’t know,” Love says. “When families have allowed us to stand with them during a horrible time, it’s just our presence that helps. There’s nothing we can say to make them feel better, it’s just being there and standing with them. It’s a privilege and a humbling experience for Blair and me when we can stand by a family during trying times.”