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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.

Is there any area where you feel like you’ve really been able to make an impact?

I really think talking to the med students is such a powerful experience.  I feel like they’re listening, like they really care.  I feel like we’re getting them at a point where they’re still being shaped as physicians and we have the ability to help impact how they view patient and family interaction.  That’s my favorite – and they ask such great questions.

What are some of the things you hope to see change?

just different quote boxGetting told your child may have Trisomy 21 is such an overwhelming diagnosis when you’re first given the news.  It just feels so much like “I can’t do this” at first, and I’d like to see that change.  I was petrified, too.  I was devastated.  Before that day, I’d expected to have a miniature version of my other son at some level.  But once you accept that your child will be different, not better or worse – just different – that’s the first step.

In some ways being a parent to Teddy is even easier sometimes.  He just really loves you.  You walk in the door – he’s so excited sometimes he can barely breathe.

When you talk to families who are raising children with down syndrome, they have happy stories to tell.  I want people to think about children with Down Syndrome as just another variation on our human theme.

If we can help each family make a decision that’s right for them, without being influenced too much one way or the other by the way the news was broken to them, that’s what I hope to accomplish.

Are there other aspects of care you think could be more family-centered for families with Down Syndrome?

emily campbell - teddyEven though Teddy is not very verbal, I prefer people not just ignore him.  He understands much more than he can verbalize. These kids usually rise to the occasion.  He might not be able to verbalize what you told him, but usually if you tell him to do something he does it.  So I hope to help encourage clinicians to not just speak to me, but to speak to Teddy, to expect him to be involved in his own care, and not to lower expectations of him unnecessarily.

It’s a fine balance – because you don’t want to have people not be understanding of his limitations either.  And I try not to judge when a doctor or nurse says something that I know he or she doesn’t mean to be interpreted the way I might interpret it.  But little things can make such a big difference in the way you speak with families in terms of building trust and keeping communication open.

Even things as simple as the developmental milestones questionnaire that the pediatrician’s office has you fill out at your routine appointments.  When you hand the parent of a child with Trisomy 21 that questionnaire, it just starts the whole appointment out with a feeling of disappointment in the milestones you HAVEN’T met.  Little things like that can distract you from the more meaningful conversations you can be having with your care team during those appointments.  So we’re talking about whether there are some variations to how families with kids living with developmental delays can work through this process. Maybe that entire questionnaire isn’t necessary – or maybe there is a different way to do the assessment with these families.

If we work on simple things like that, we can really change the experience for families.  I know we can do a better job if we all work together.

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emily campbell - thumbEmily Campbell and her husband Birum (Campy) Campbell are parents to Sophia, 18, Quinn, 7, and Teddy, 4.  Emily is a valued advisor on several Patient & Family Centered Care committees at C.S. Mott Children’s Hospital.  She is also a Special Projects Librarian for Collections at the University of Michigan.

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best children’s hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.