A Craniosynostosis Curveball Her son’s diagnosis led this SLP to a new appreciation of the patient’s perspective. First Person/Last Page
First Person/Last Page  |   July 01, 2015
A Craniosynostosis Curveball
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Special Populations / Genetic & Congenital Disorders / First Person/Last Page
First Person/Last Page   |   July 01, 2015
A Craniosynostosis Curveball
The ASHA Leader, July 2015, Vol. 20, 72. doi:10.1044/leader.FPLP.20072015.72
The ASHA Leader, July 2015, Vol. 20, 72. doi:10.1044/leader.FPLP.20072015.72
“Craniosyno—I can’t say it,” I said, while attempting to schedule an appointment with my son’s neurosurgeon. “Craniosynostosis,” the receptionist replied.
My son was diagnosed with sagittal craniosynostosis, a rare birth defect in which the cranial sutures fuse prematurely, resulting in skull deformation. Without surgery, craniosynostosis can cause a permanent irregular head shape, intracranial pressure and developmental delays. After surgery, a baby typically wears a helmet to promote normal head growth.
When my son was 3 weeks old, our pediatrician suspected that my son’s head shape was abnormal. She was apologetic when X-ray results came back: “Looks like you’ve been thrown a curveball,” she said. I was scared. I knew nothing about baseball, let alone craniosynostosis.
We consulted a craniofacial team at a nearby hospital. My husband and I sat with what seemed like an army of professionals, each introducing themselves and their interns by name and specialty.
I am a speech-language pathologist, but this time, I was on the other side. Each professional took a turn presenting his or her opinion and role in my son’s care. We were bombarded with information and given a folder filled with scripts and pamphlets with which to hit that curveball, I suppose. I couldn’t control my tears. I felt completely overwhelmed.

Empathy—the ability to identify with or experience the feelings, thoughts or attitudes of another—is now a significant part of the treatment process for me.

As we left, the physical therapist gave me a pat on the shoulder and said, “Be sure to monitor his developmental milestones, especially in his language development.” I thought to myself, “That, I can do.”
In my work, I often think back to our craniofacial team meeting. I recently attended an Individual Family Service Plan meeting for one of my early intervention clients. The team—a service coordinator, occupational therapist, physical therapist, several developmental interventionists and I—met with the child’s mother to review her progress and discuss her transition out of early intervention. With good intentions, each therapist gave information and explained what the transition would be like.
At one point, I saw the mother’s glassy look, which felt very familiar. I turned to her and slowed down the discussion by saying, “This must be very overwhelming for you.” She looked at me, took a deep breath, smiled with appreciation and said, “Yes, very.” The focus turned to the child’s mother expressing her concerns and asking questions at her own pace.
My son is now four years post-surgery, and each year on the “cranioversary”—the anniversary of his surgery—I reflect on how far he has come. I can now view this life event as a teaching experience. I have learned the variety of emotions that come with a new diagnosis: denial, fear, grief and, although it may seem out of reach early on, acceptance.
Ultimately, acceptance, along with family support, gave me the strength and motivation to research the condition, meet with several neurosurgeons and determine the best surgical method for my son. I have mentored and helped other families dealing with craniosynostosis. And I have a new approach to speech-language treatment and interactions with parents.
Empathy—the ability to identify with or experience the feelings, thoughts or attitudes of another—is now a significant part of the treatment process for me. Yes, as SLPs we have a great deal of knowledge and information from our field, but let’s not forget to take a step back and empathize with our clients. Pause to think about the variety of feelings that come with a new diagnosis or unfamiliar territory, such as a new communication device. When we can relate to the feelings or experiences of others, we can better help clients hit that curveball.
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July 2015
Volume 20, Issue 7