You wouldn’t know it by looking at her, but my seven-year-old daughter, Soraya, is a particularly anxious child. I say that because on the outside, she is cheerful and colorful. She wears bright-colored clothing and has the best attitude and personality. Her glasses are pink and she wears a large bow in her hair every day. But she gets anxious in new situations where she doesn’t know what to expect.
Soraya has multiple health issues without a specific diagnosis
Because she has multiple health issues without a specific diagnosis, we encounter unexpected situations frequently. She has low muscle tone, a developmental delay, and is g-tube dependent. She also has sensory processing disorder and is verbal but not always 100% understandable. She’s able to walk with ankle-foot orthosis (AFO) braces and occasionally uses a wheelchair. Whatever she has, it affects every system in her body – and some are more involved than others. For perspective, she sees 17 different specialties at Cincinnati Children’s and has about 145 appointments there every year.
We’re frequent fliers to say the least, and around 35-50% of those appointments require some sort of anxiety-producing procedure. They’re necessary to help us understand what’s going on and to provide her with the best therapies and treatments. But they’re also tough for her to get through – at least, until we started utilizing child life.
Before we started using child life, we lived in another state. With any procedure she had, such as getting a blood draw or having her eyes checked, she would cry so hard that she would throw up. She’s already an anxious kid, so naturally medical procedures just made it worse.
Therefore, when we moved her care to Cincinnati Children’s, we started giving the doctor or lab a heads up about her anxiety. They would bring a child life specialist in and that’s when we learned that it didn’t have to be that way. In fact, child life has completely changed Soraya’s entire health care experience.
How child life helps Soraya
Her procedures are no longer traumatic and anxiety producing. I tear up every time I see what they do. It’s really humbling. I’m a pediatrician, examine kids every day, and can’t do what they do.
They use many different tactics, depending upon what the test is. For bigger procedures, they’ll start preparing her a week or so before it happens. They’ll send me visuals so that I can give her a step-by-step explanation. We’ll practice every day using the provided sequential picture. If a mask is involved, they may send that to me ahead of time so that she can try it on and realize it’s not scary.
The day of, they’ll use similar visuals, as well as utilize distraction and positive reinforcement. They key into the things she loves and stay engaged with her through the procedure.
For example, she recently had to have an urodynamic study, which requires a urine catheter as well as a rectal probe. She had to be awake and relaxed through the whole thing – something that would be challenging for any seven-year-old child, not to mention the most tranquil adult! But one of our favorite child life specialists, Kerri, was there and walked her through the procedure step by step. She allowed Soraya to communicate her fears and provided her with tools to distract her and calm her.
Because Soraya had been exposed to the procedure during the week leading up to the event, her anxiety was lessened and we were able to successfully get through it. This study allowed us to find out a new diagnosis with Soraya’s bladder and gave us new insight on treatment options. It also helped us to piece together that her bladder muscles are also affected by her underlying condition.
Thanking Child Life
I can’t thank child life enough. They are a vital division in the hospital, and I can’t imagine going through these procedures without them. Because we have a daughter who has an undiagnosed medical condition, these procedures are absolutely critical for us to get the data we need to help treat her. And it’s amazing for me to see that more often than not, child life helps that bright, beautiful personality of hers stick around even during the procedures.