Supporting a child through life’s hardest medical moments

Sunday, March 8, 2015 | 3 a.m.

Child Life Specialists navigate the difficult task of explaining sickness, and even death, to those too young to understand

People support each other; it’s just what we do. We find our tribe, we keep them close, and we help them through good times and bad. But sometimes the bad becomes really bad, and finding the type of support you or a loved one needs during that time can be difficult.

For parents, having a chronically ill or seriously injured child goes far beyond the realm of really bad. It is an incomprehensible struggle: It’s painful, overwhelming and one of the greatest tests of love, courage and endurance anyone can face. Most of us are not equipped to deal with such things on our own. That’s where child life specialists enter the picture — to soften the blow.

Laura Gould and Millicent Ongaco are child life specialists at Sunrise Children’s Hospital. The role of a child life specialist is to provide social, emotional and educational support for children and teens in the hospital, as well as their parents, siblings and caregivers. “We know that the hospital is a very foreign and anxious environment, so we assess the needs of the patient and the family, and then try to ease that anxiety however we can,” Ongaco said.

Gould and Ongaco hinge everything they do on providing patients with comprehensive, developmentally appropriate education. “It’s very important that children understand what’s happening to their bodies during illness and during treatment,” Ongaco said. “Knowing what’s going on, and why, grants them a level of control, and they are then able to exercise realistic choices.”

“Oftentimes, we see that children, and adults even, who understand what’s happening to their body, especially during traumatic circumstances, don’t have nearly as much fear or worry,” Gould said. Explaining complicated medical procedures to adults usually is pretty straight forward, but explaining the same thing to children takes much more creativity and finesse, two traits Gould and Ongaco have in spades.

“We cater all of our explanations to the child’s development, so the younger they are, the more difficult it can be,” Gould said. “If a child is having trouble swallowing pills, for instance, we’ll sit down with them and start showing them different techniques that will help. Maybe we’ll start with swallowing a sprinkle, and then work our way up. Sometimes it takes a while, but the day the child isn’t crying and panicking when they need to take their medication is so worth it. Recently, we had a 6-year-old with cancer, so we explained what was happening using Red Hots as red blood cells, marshmallows as white blood cells and rice as platelets. Afterward, she was even able to teach some of the nursing students why she was in the hospital.”

Gould and Ongaco also use a technique called “medical play,” where they act out relevant medical procedures to familiarize a child with the process and the tools doctors and nurses will use. The Child Life Specialists use a blank cloth muslin doll, a play doctor’s kit and sometimes real medical equipment, such as an IV without the needle.

“We’ll use the doll to explain, step-by-step, what will happen, or what has happened, during the procedure,” Ongaco said. “And then we’ll switch, and let them play the nurse and explain back to us. Depending on the child and their development, we’ll also use different language to help explain, like we’ll call a tourniquet a rubber band that hugs your arm really tight.”

While Gould and Ongaco tailor the delivery of information to the child and his or her development, they never compromise the integrity of the information.

“I like to stress the importance of honesty with children,” Gould said. “You don’t need to tell them every little detail, but if you’re not telling the truth, kids will pick up on that.” Often times, children’s fears are greater than the reality of the situation, so being open and honest, albeit gentle, can be comforting to them.

“Showing them what’s going to happen in a nonthreatening way helps them start to prepare coping mechanisms,” Gould continued. “It gives them realistic choices and lets them feel like they’re in control.”

As Gould and Ongaco stress the importance of the children being able to make choices and maintain a sense of control, it becomes clear how invested they are in their patients. The women focus on seeing past the children’s illnesses to understand the kids for who they are.

While most kids run and skip at the playground, these children get shuffled from exam room to exam room. Gould and Ongaco work to ensure their patients maintain their identity throughout that shuffle, to be an active participant in establishing their new world order, and most importantly, to give their patients a stake in a life in which the future might be uncertain.

“We have kids who will be at the hospital for months at a time, or kids who have to come back regularly for treatment, and we get to know them really well,” Ongaco said.

“We also get to know, and work with, their families, parents, siblings, sometimes friends. And of course their stuffed animals,” Gould laughed. “We know all their stuffed animals’ names, stories, all that.”

For Gould and Ongaco, the joy is found within the play, laughter and the “ah-ha!” moments when it’s clear their patients are starting to understand and cope. “It’s very rewarding to see those moments of understanding,” Gould said. “When they’re using the tools you gave them, when they know what they’re going through and that they’re not in trouble and they’re not being punished, they just have a condition and they’re able to get through it.”

Socialization is important for patients

Beyond education, child life specialists Laura Gould and Millicent Ongaco strive to create a world fit for children and teens in a very adult hospital environment.

They work with pediatric nurses and volunteers to plan fun activities, recreation, play and socialization for their patients.

“The first thing the teens ask, especially, is if there are other teens their age there,” Ongaco said.

“Socialization at the hospital is so important,” Gould said. “Their peers’ thoughts and opinions can really help to shape their experience. There are things I can tell them to comfort them, but it means so much more when it’s coming from a peer.”

“Sometimes during activities, they’ll start sharing about why they’re there, and it’s amazing how quickly they’ll build relationships from there,” Ongaco said. “The parents do the same thing, too, and building those relationships are important because they need each other. They need to know they’re not going through it alone.”

“We deal with bereavement support, too, and that’s very difficult. It can be death bereavement or the bereavement of what their life used to be like, of the things that will never be the same again. You have to maintain the balance of empathizing but still providing support. ... You just have to stay focused on providing whatever it is they need,” Child Life Specialist Millicent Ongaco said.

“I’m grateful everyday that these children allow me to walk on this journey with them. I know how personal being in the hospital, being sick, the whole experience is and being able to help is very humbling,” Millicent Ongaco.

If you are interested in volunteering, visit the Sunrise Children Hospital’s website at sunrisechildrenshospital.com/service/line/child-life.