Owen’s Craniosynostosis Journey: A Real Patient Story

Jul 23, 2024 | admin

National Cleft and Craniofacial Awareness and Prevention Month is an opportunity to honor the patients and surgeons whose lives are touched by cleft and craniofacial anomalies.

To better understand how a patient’s diagnosis affects a family, ABOMS Diplomate Jason E. Dashow, DDS, MD shared this interview with the parents of his patient, Owen.

How did your cleft and craniofacial surgery journey begin?

Our son Owen, now seven, had a little different journey than most of those we met on our cranio path. While in utero, there were concerns about the length of his skull, but they were in the end deemed fine and he spent the first 6 months of his life like any normal baby. However, around that time the pediatrician began to be concerned about the shape of his head and we were referred to an orthotics office to be fitted for a helmet. Living in what is considered a more remote area, Alaska, we are limited on what care and specialties are available. His case at the time was not deemed serious in any way, so he was fitted for a helmet and off we went. We continued helmet use with no change in head shape, then eventually opted to stop enforcing it because it was so uncomfortable for Owen and he would constantly drip sweat from his head in the summer heat.

A month or two later when Owen was a little less than a year, he had a weeklong fever that we could not get under control. As concerned parents, we took him in to see the soonest available pediatrician. I will never forget the moment when this brand-new doctor walked into our room, whom we had never met, and said, “I know you are here for a fever, but I am not worried about that at all. I am, however, concerned about your son’s head.” While we had no idea about anything cranio or what was about to happen in our life, this doctor had just witnessed a similar case and immediately sent us in for full imaging and to experts that were new to the area. Experts that would help us make history and change our lives for the better.

How have you seen your doctor’s passion for cleft and craniofacial surgery shine through in their work with you?

The CT scan came back with a clear vision that our son had sagittal craniosynostosis. While he was deemed to have “the best kind,” the fact that it was caught so late into his life meant rectifying the condition would be much more invasive and more dynamic than anyone had hoped for. We soon learned that the corrective procedure was something that had never been done in the state of Alaska.

“We soon learned that the corrective procedure was something that had never been done in the state of Alaska.”

In walked to our lives Dr. Jason Dashow (cleft & craniofacial surgeon) and Dr. Benjamin Rosenbaum (neurosurgeon). When our journey first began with them, all the way to the end, they were there for every step, answering every question, and working meticulously with insurance to allow us to stay in state. Alongside them, our family would pioneer craniofacial surgery in the state of Alaska. This was a huge deal for us, allowing us to stay in the comforts of our community with another young son at home, as well as much of our family support being here. This also allowed the months of preparation and testing to be affordable as we went back and forth between appointments before and after treatment.

In what ways did you feel supported throughout treatment/your diagnosis?

Due to the extreme care and compassion we felt from our doctors, we had all the confidence in the world. But as you can imagine, on surgery day our nerves were shot and the amount of time our son was about to spend on the table in a cranial vault reconstruction did not give us much comfort. However, when they wheeled our baby back, we will never forget when Dr. Dashow took the time to come to us, held our hands and said, “I will take care of him as if he was my own.” We had no doubts in that moment our son was in the best of hands. It is one thing to be a good doctor, it is another to be a good human. After an 8-hour surgery, Dr. Dashow then spent two more hours in the ICU working with the nurses to make sure Owen would be well cared for and have everything he needed those next few days. He routinely checked in while we spent those long days in recovery. And even six years later we still connect with him regularly.

How did your treatment affect your life?

Standing from the perspective of a parent, this was a very difficult time for our entire family. We felt very lonely in moments and very supported in others. Our children were small and could not fully understand the situation and close family friends who had never been through such a thing were not able to truly understand either. While the time during treatment was difficult, we can happily say that our son who is now almost eight, is thriving! His surgery was a huge success, and he is an active healthy child. His scar is only visible when you look for it, another Dr. Dashow victory, and he will never need treatment or cranial surgery again.

“...we will never forget when Dr. Dashow took the time to come to us, held our hands and said, ‘I will take care of him as if he was my own.’”

What advice do you have for patients looking for a cleft and craniofacial surgeon?

Find a doctor you not only trust, but you feel supported by consistently. You should be able to ask any questions and note any concerns with ease. Ask yourself — do they show empathy and compassion towards this situation? Make sure you are confident with them not only as a doctor, but as someone you would trust your life (or your baby’s life) with. Surgery is a big deal and big decisions must be made. You and your doctor should always be a team.

What advice do you have for patients dealing with the same condition you were treated for?

One of the biggest things we learned about Craniosynostosis is that each case varies so much, and there are so many different kinds and treatments. However, there is support available! From social media outreach groups, to wonderful non-profits like Cranio Care Bears that send packages before any surgery. Don’t isolate yourself. Share your story and find support. Talk with the doctor and see if they have contacts of past patients who would be willing to share their experience or help offer support. This is not an easy journey for anybody, but you are not alone. Have faith. Let people help you and find gratitude and grace in each day. While the moments and times will feel hard, the success rates are HIGH! Life is tough, but so are you.