Little changes to make a big difference

Working together to change the experience for families of children with Down Syndrome

March 21 was Down Syndrome Awareness Day.  In celebration of all our “Little Victors” with Trisomy 21 and their families, we interviewed Emily Campbell, mom to the very charming Teddy, and an active volunteer in our Patient and Family Centered Care Advisory Program.

How did you come to be involved in our patient and family centered care programs?

emily campbell ann arborMy son Teddy was prenatally diagnosed with Down Syndrome at the Fetal Diagnostic Center at University of Michigan Von Voigtlander Women’s Hospital.  At the time, I felt like I was really supported – people were really helpful and I was well taken care of.  I felt like at the Fetal Diagnostic Center I was given the space to make a decision on my own about what decision was right for my family. But as I got more involved in the Down Syndrome community, I found that not everyone was getting that level of support when they are given this diagnosis.  So I became interested in helping shape how this diagnosis is given so it’s not just presented as a list of potential problems.  I wanted to help shape that conversation a little bit more.

What are some ways you’ve been able to do that?

Mostly I tell my story – Teddy’s story, our story of what happened for us.  For the past 3 years I have been speaking to the medical students entering their 2nd year of med school in a session called “Breaking bad news.”  Each semester I also talk to an undergrad psychology class of students preparing to go into social work or other health careers.  I’m also frequently asked to speak with other social work classes or other groups around campus looking to have a patient / family story told.

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