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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Inspiring HOPE

The care staff that allowed Evan Newport to lead a happy childhood inspired his father, Scott, and brother, Noah, to found the HOPE Awards at C.S. Mott Children's Hospital.

The care staff that allowed Evan Newport to lead a happy childhood inspired his father, Scott, and brother, Noah, to found the HOPE Awards at C.S. Mott Children’s Hospital.

By Scott Newport

This story is about a family. A family with a sick child.

The family I’m talking about is my own. I’m Scott, otherwise known as “Dad.” It all began on a Saturday afternoon last year when my wife, Penni, suggested it might be nice if I took our oldest son, Noah, out to the wood shop to work on something together. It was a good idea, and Noah was excited to have some alone time with Dad. (Not always an option when your younger brother has a terminal illness.)

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The story of giving back: All Stars and the Anderson family

Michael Anderson received his first chemotherapy treatment on Christmas Eve, 2010.

The fundraisers from Kensington Valley Hockey Association, including the Anderson family, present a donation worth more than $12,000 for the Mott Oncology Department to Drs. Nicholls and Castle. Michael is in the center, next to his twin brother Sean.

The fundraisers from Kensington Valley Hockey Association, including the Anderson family, present a donation worth more than $12,000 for the Mott Children's Hospital oncology division to Drs. Nicholls and Castle. Michael is in the center, next to his twin brother Sean.

The Anderson family spent the holidays at C.S. Mott Children’s Hospital, their room decorated with lights, a tree and even a leg lamp like the one in A Christmas Story. Word about the festive display spread quickly, and visitors from other floors came to see. Donated holiday gifts were being given to patients and Michael’s mother, Kathleen, said this first stay at Mott immediately showed them the warmth and giving found in the hospital.

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Ava Jones : One special story from the WTKA Takeover for Mott radio-a-thon

Ava Jones and her mother, Kori

Ava Jones with her mother, Kori. Ava has a rare genetic disorder and hypotonia, which leads to weak muscles. Because of this, she is unable to eat orally and uses a feeding tube.

The Jones family had no reason to anticipate health problems with their third child, Ava.

Ava’s mother, Kori, had a typical pregnancy and delivery and had two healthy children at home. But just 10 weeks after delivery, the Jones family was at the C.S. Mott Children’s Hospital Emergency Department.

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Hail to a Little Victor: Mitchell’s Story

As we prepare for our annual Children’s Memorial Service coming up on April 22, we asked one of the speakers for this year’s memorial service to share her story in honor of all the Little Victors whose courage we celebrate, both at the memorial and throughout the year.

Mitchell Ryan, one of C.S. Mott Children's Hospital's many "Little Victors" will be honored at the Children's Memorial Service on April 22.

Mitchell Ryan, one of C.S. Mott Children’s Hospital’s many “Little Victors” who will be honored at the Children’s Memorial Service on April 22.

Heroes come in many forms. Their acts are often blatant and powerfully triumphant, but sometimes they are more subtle. Sometimes they take their time and fight a long battle, but show their true heroism by teaching us along the way. I was saved by a hero named Mitchell. A little boy with a sunny disposition and infectious laugh that warmed the hearts and touched the souls of everyone he met. None more so than mine.

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Genetic hearing loss: Ava’s story

genetic hearing loss

At four years old Ava’s parents notice something different about their daughter’s behavior. In addition to being quiet and withdrawn, Ava appeared to have trouble hearing. Ava was referred to U-M C. S. Mott Children’s Hospital. Her doctor was able to explain the cause of her hearing loss and, more importantly, treat it.

Steve and Diane began noticing something different in their daughter Ava’s behavior when she was four years old. In addition to being quiet and withdrawn, she appeared to have trouble hearing. “We were at a birthday party and we were having to talk to her so loudly,” said Ava’s mother Diane. “It was so clear to the others at the party that something was wrong.” That was the wakeup call they needed.

After almost seven months of seeing various physicians and specialists, a genetic test revealed Ava had inherited two different mutated genes — one from each parent — resulting in hearing loss.

Ava’s parents were shocked. There was no family history of any hearing issues, let alone genetic hearing loss. “We were carriers. But when you’re a carrier you don’t know that you have an issue, but you can pass that genetic code onto your children.”

Until recently, little was known about genetic hearing loss. U-M C.S. Mott Children’s Hospital is one of only a handful of hospitals in the world researching genetic hearing loss in addition to treating it.

“Originally we started out a different hospital because of our health plan,” said Diane. “But once the specialist there realized what the genetic results were, he immediately said, ‘I’ve got a perfect person that you need to see over at Mott Children’s Hospital. She’s a specialist in genetic hearing loss; that’s her passion; that’s what she researches.  “Which was Dr. Marci Lesperance.”

With the help of Dr. Lesperance, Ava and her parents were not only able to understand the cause of her hearing loss, but also how to treat it, which included getting hearing aids for Ava.

“Now she’s a lot more confident in social situations because she can hear what people are saying to her and respond appropriately,” said Diane. Her parents have even recently noticed Ava humming and singing along to the radio. “It’s sweet to hear her humming,” Diane added. “And it’s just fun to watch as a parent to see your child flourish.”

In addition to being able to hear, when it comes time for Ava to have a family, she now knows in detail what she carries and how it might affect her own children one day. As Diane said, “Now we feel armed with knowledge, and knowledge is power when you think about it.”