When kids get sick, it can be stressful for the whole family. Imagine then, the anxiety of having to admit your child to the hospital. At Nemours /A.I. duPont Hospital for Children in Wilmington, helping pediatric patients and their families cope with medical treatment is the job of Child Life specialists. For this week’s Enlighten Me, Delaware Public Media's Cathy Carter traveled to A. I. duPont Hospital to learn more about the work of those specialists.
[audio:http://www.wdde.org/wp-content/uploads/2014/03/ChildLife.mp3|titles= Delaware Public Media's Cathy Carter explores A.I duPont Hospital's Child Life program.]
In the Child Life activity center at A.I duPont Hospital for Children in Wilmington, two boys are engaged in an air hockey battle. A few others are swapping Pokemon cards and in another corner of the room, a handful of kids are laughing in line at the ‘make your own milkshake party.’ If you didn’t know it-you would never believe you were actually in a hospital. But as Beth Carlough, Nemours Child Life manager says, that is the whole point.
“Nothing medical can happen in that room, Doctors and nurses are welcome to come in, but a IV can't be started in that room, an incision can't be looked at, or even blood pressure taken," said Carlough. "So when the kids come in that room, sometimes its a little overwhelming because there's so many choices, but we want that choice. When kids are in the hospital, they have very little choice. They have to be here. They have to take the medicine, even if its tastes yucky. They have to wear the cast or have the surgery. When they get to that room, they feel very safe."
The activity center is where we first meet Katie Surles of Wilmington. The seven year old is attached to an IV pole and her long sandy brown hair is tied up in a ponytail so it doesn’t get caught in the long clear hose inserted inside the tip of her nose. The NG tube is removing fluid from Katie’s stomach-a necessary procedure, following her latest surgery. Katie is drawing a picture in her journal when she tells us why she’s here.
“Well, my intestines weren't in the right place, so they got twisted up. So, I needed to come here," said Surles.
One night in early January, Katie woke up with a stomach ache. Her parents initially assumed she might have caught a bug that was going around but as the night went on- the pain in Katie’s abdomen became excruciating. Her parents decided to take her to the emergency room.
"And it turned out to be a condition where her intestines, [because of] a birth defect, were malrotated. They had twisted on themselves and lost blood supply. So, she had her first surgery that night and has had three others since that time," said Tracy Surles, Katie's mother.
With the exception of a few short visits home, Katie’s been at A.I duPont Hospital for Children for over two months.
At work with A.I duPont Hospital's Child Life Specialist Jana Teagle
At work with A.I duPont Hospital's Child Life Specialist Jana Teagle
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“For the vast majority of kids, this is not normal, and having people they don't know doing things that are sometimes unpleasant to them can be very difficult," said Jana Teagle, one of the Child Life Specialists at Nemours.
These professional caregivers can be unit based, assigned to the ICU or accompany children to procedures, and service based, working with kids after they’ve had surgery of some sort. In either case their mission is the same - to help kids cope with medical treatment.
“[My role is] working with them to meet them where they are, figure out exactly what it is that's upsetting to them and try to help them work through that," said Teagle. "So [we use] toys, arts and crafts, things they would be doing if they weren't in the hospital. A lot of the fears and anxieties they have come out through their play and we're able to help them process through that."
Child Life Specialists are experts in child development. Beth Carlough says they may use puppets, dolls and stuffed animals to explain medical procedures to young kids. For teenagers, iPads and guided imagery can help relieve tension.
“And what we’ve learned is that through education, being honest with children, and letting them know what to expect, anxiety usually decreases," said Carlough.
But when a child is hospitalized- the repercussions go well beyond the patient.
“Great point. So, when a child is hospitalized, or has any kind of medical treatment, it affects the whole family,' said Carlough. "Obviously, it affects the parents, but it also affects the siblings. Siblings see the fear and anxiousness in the parents."
And that’s why the Child Life program at duPont Hospital for Children say they emphasize family integration. On one of our visits, two specialists- Bethany Polash and Jen Jankowski held a workshop designed to instruct nurses on how to support siblings during hospitalization.
“A lot of times, we'll do things like an 'all about me wall' for siblings in the patients room," said Jankowski. "The nurses and the doctors become like a second family to the patients and when the siblings come in they don't feel like they have this other second family. So, by putting some of their likes and dislikes on this poster, the nurses when they see siblings can say 'Oh, hey I know your favorite color is purple or I hear you pizza is your favorite food.' Things like that may seem like minor things, but it means a lot to these we ll siblings."
Jankowski says families are often surprised to learn about all the resources available.
“Of course, they expect there to be professional in the medical field to understand all the medical stuff, but to see a family that never heard about Child Life or had no idea that we offered any support for their siblings or the patient to cope with a poke or a test, or whatever it may be - just to see those families really realize all that we can do, and how we are invested in their whole family and not just fixing the child's medical problem [is rewarding],' said Jankowski.
“That was very important to us," said Tracy Surles about the support Child Life provided her family. "It was so sudden and unexpected that it was very difficult for the family to digest. Also, the amount of time [the situation required], especially initially. My parents flew in from Florida to help with my other daughter, but my husband and I the first couple of weeks were so scared. We were at the hospital most of the time. So, it was tough trying to keep my other daughter involved and understand what was going on. It was important for us as a family."
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When we next meet up with Katie Surles, she’s untethered from her IV. Her hair is flowing freely and she’s even wearing a pair of jeans instead of a hospital gown. Katie is actually going home. But first there’s time for one more play date with Jana Teagle.
“So what I thought that what we do today is we would do some art, but with medical supplies," Teagle tells Surles. "It's different than a brush, isn't it?"
"Yeah," Surles responded.
"Ut oh, look what we did. We made a mess," Teagle said laughing. "Oops, we made a mess. But that's part of the fun, right? Making a mess? And this is coming off today when you go home anyway so it doesn't even matter, does it?"
"Are you going to miss us a little bit?" Teagle added as they wrap up their session.
"Yeah," Surles said.
For Jana and the rest of the child care specialists Katie’s story has a happy ending. But the reality is play is hard work. For every kid that gets to go home, is another whose medical condition will not improve. I asked Beth Carlough if doing this work requires a special sensitivity.
“Absolutely. An they do difficult work. So I work really hard at getting my crew to care for themselves. I focus on caring for the caregiver, and giving them tools because you need to be able to be sensitive and caring, but also leave it her the best you can and also recover from it" said Carlough. "Our office is kind of a safe zone where sometimes we do shed a tear and support each other through it. It's not always the easiest job."
"When we're out with our friends on the weekends, not many people want to hear about our day to day becaus they say 'Oh, how can you work with sick children?" Carlough added. "I look at the positive. MOre positive happens here. Children get well."
You can learn about the Child Life Program at A.I duPont Hospital on their website.