CDRC Down Syndrome Clinic collaborates with team in Syria

It’s 8 a.m. on a Sunday morning in Portland, and 6 p.m. in Idlib, Syria. Health care providers, therapists and teachers – all of whom have a passion for supporting youth with disabilities – log onto Zoom to teach and learn from one another. The speech language pathologist from OHSU describes strategies to promote communication for children with Down syndrome, using signs and pictures when verbal communication is coming along slowly. The following week, a physical therapist teaches exercises to help build strength and balance for walking, running and playing. An OHSU neurologist presents a lecture on medical issues and health across the lifespan, including ways to identify Down syndrome early on after birth, as it is currently rare to receive a prenatal diagnosis in Syria. The lectures are interpreted to Arabic in real time to enable the connection that comes from synchronous learning.

At one point, two children climb onto their parents’ laps to make guest appearances – one in Syria and one in Portland. They wave to each other across their screens, across the world, and smile shyly while the lectures continue.

How did this collaboration come about?

In early 2021, I was approached by a family friend who wanted to know if I could help with a project. He had recently seen a CNN story about a center for children with Down syndrome in Idlib, Syria, and wanted to help. This is a center in an area that’s been particularly hard hit during the war. It functions as both a school and clinic for about 40 children with Down syndrome. Their teams are made up of volunteer therapists and teachers who created this space and effort in the face of unimaginable challenges. When my friend started his fundraising campaign, it became clear that in addition to funding, the Syrian staff were seeking a specialty training related to Down syndrome.

As a longtime member of the Down Syndrome Program at the Child Development and Rehabilitation Center (CDRC), I knew we could help. I reached out to our team and received overwhelmingly enthusiast responses. Everyone was eager to support this center in Syria, and, most importantly, was hopeful we could have a positive impact for their children. It seemed like a great opportunity for global outreach and partnership.

The process of determining the Syrian team’s learning objectives was complicated, but important. We shared questions back and forth via email, WhatsApp and Zoom. Our team took their questions and developed a series of five lectures on various topics related to Down syndrome. I then worked with the Syrian American Medical Society (SAMS) to have our slides translated into Arabic and to ensure material presented was accessible and culturally responsive. We agreed on a virtual lecture schedule and present lectures in English, while our colleague, Dr. Asma Taha from the OHSU School of Nursing, interprets live to Arabic, and the team in Syria follows along from the translated slides.

What are the goals of this collaboration?

Photo of laptop with screen showing medical diagrams with Arabic textThe overarching goal is to support children with Down syndrome. If we can share our skills and expertise developed at the CDRC to lift up professionals with limited resources in Syria (or anywhere that has different or limited access to resources), we have the opportunity to reach many more children and potentially impact their lives in a positive way.

A secondary goal of the presentation was for ongoing collaboration and relationship building with Idlib Center therapists for more targeted support with their children. Together, we have identified several resources we can provide, including books, translated materials and therapy equipment that will now be built into the fundraising budget. We’ve also identified more detailed follow-up training that is needed, including evidence-based interventions for communication development. Additionally, Dr. Taha has agreed to mentor and advise on the Idlib Center director’s Ph.D. project. There will be more to come as we continue our lecture series.

How has this collaboration been impacted by the COVID-19 pandemic?

At the CDRC, our focus is combining clinical excellence with innovative research to provide the best care for children with special health needs through family-centered services. This project has always aligned with our mission, but really appeared possible because of our new use of technology during the pandemic. Prior to 2020, I likely wouldn’t have considered synchronous lectures to a group of professionals across the world. It’s hard to believe now, but prior to the pandemic, I’d never been on a Zoom meeting of any kind!

Although it takes place in the virtual realm, this project has brought connection in a time we deeply need it. Working in healthcare has obviously been challenging the last year and a half, and it is humbling and inspiring to see our team eagerly rise up with this opportunity. We are volunteering our time and doing so with excitement and hope that the professionals working at the center in Syria will be empowered to support their children in new ways.

Another thing that strikes me about our team is our ability to see a learning opportunity, and to never stop growing. This endless learning potential is one of the best parts about working at OHSU. There’s always something to learn from other cultures, professionals, parents and children, and I take pride knowing I work with a group of people who believe that whole-heartedly. I personally find it inspiring to see what this group of therapists in Syria has been able to create with limited resources, during a civil war, and with societal attitudes toward disability. Rather than focusing on the many barriers, they are envisioning what is possible and making it happen.

What’s next?

Though this series of lectures wraps up next month, I’m confident our relationship with the Syrian team will continue. I hope we can expand this model to others who would benefit from specialty training – both here in Oregon and around the world.

Headshot of a smiling personMargaret Wolf, M.S., OTR/L
Assistant Professor of Pediatrics
OHSU School of Medicine

 

 

 

The CDRC is the clinical arm of the Institute on Development and Disability (IDD) at OHSU. The IDD’s mission is to improve the lives of those living with disability and special health needs through clinical services, scholarship, education of the next generation of professionals, and advocacy, with the aim to have an impact across Oregon and beyond.

IDD participants include: Margaret Wolf, Dr. Kerry Haugh, Katherine Breithaupt, Dr. Amy Costanza-Smith, Erin Cochran, Joseph Pinter and Asma Taha

Special thanks to: Arwa Damon (CNN) for highlighting the Idlib Center in the first place; Jim Seidl (Friends of Idlib Center) for bringing us in; Dr. Kurt Freeman, the IDD Director, for supporting this project from the start; SAMS and Dr. Taha for assistance with translation and to the staff in Syria for their good work.

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