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  • Writer's pictureNancy Hellman

A Physical Therapist Perspective on Wolf-Hirschhorn Syndrome

Olivia's Journey

Her name is Olivia. Initially a new referral, she now resides permanently in my heart. No, I am not her parent, grandparent, or aunt; I was her physical therapist for four and a half years.

Before Olivia, I had never worked with such a tiny infant other than in the NICU (neonatal intensive care unit). I treated her at her grandparent's house while her mom and dad were at work. Grandma and Grandpa doted on Olivia as all grandparents doted on their grandchildren. When I started working with Olivia, she was five months old, she demonstrated very low muscle tone (hypotonia), which hindered the progression of her developmental milestones (independently holding her head up in any position – upright, side-lying, and in prone (on her belly)).

The hypotonia also affected her ability to drink from a bottle efficiently. Many different bottles and nipples were tried. The physical therapy (PT) aspect included utilizing different positions and equipment to support Olivia in allowing her to focus her energy on eating from the bottle rather than trying to organize her body to hold in an appropriate position. Olivia continued to have many eating challenges, and eventually, she had a Mickey button placed to ensure proper nutrition.

Why is the Physical Therapist Talking So Much About Eating and Nutrition?

When an infant demonstrates hypotonia to the degree that Olivia does, it requires her to expend a significantly increased amount of energy to accomplish a movement versus another infant of her age who demonstrates typical muscle tone. Muscle tone and muscle strength are different. Decreased muscle strength can be a symptom of hypotonia. Muscle tone is the resting state of a muscle; in someone with typical muscle tone, when a relaxed muscle is touched, resistance is felt; when there is a diagnosis of hypotonia, and a muscle is touched, it feels soft. Physical therapists cannot affect hypotonia with their treatment interventions. 

So What Can We Do?

We work with the children to ensure they have good muscle strength and teach them the skills required to achieve developmental milestones. The developmental milestones are broken down into pieces. Once a piece is mastered, the next piece is added until all pieces come together for the final movement (hold their head up in all positions, roll front to back and back to front, and move from supine/prone into a sitting position, etc.). Each of these pieces can take varying amounts of time to achieve. Every accomplishment is celebrated with clapping, hoorays, and hugs. 

Physical therapy with children diagnosed with Wolf-Hirschhorn Syndrome is about patience. Olivia always wants to please and puts her all into what she is working on, although she also has become a master at avoiding when the task is particularly difficult or if she isn’t in the mood for that activity at that time. Her go-to escapes include fleeing from the situation or the ever-popular let’s snuggle!

What motivates Olivia? Music! Singing in my horribly off-key voice, a favorite song would sometimes suffice; other times, it was Coldplay on YouTube. Music continues to motivate Olivia; the difference now is that she will definitely tell you if the song is acceptable or not. As Olivia ages, the skills she needs to accomplish have become more difficult. She has mastered so many things that I could never provide an answer to her parents or grandparents about what she would or would not accomplish. Whenever she proved me wrong or accomplished a task quicker than anticipated, I was never happier to be wrong or surprised by Olivia!

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