Children’s Book About Transplant Surgery Inspired by Young Patient

September 25, 2018 7:00 AM

To help kids learn about and prepare for an organ transplant, two Michigan Medicine social workers wrote a special book detailing the experience.

When 9-year-old Noah Cohoon needed a kidney transplant in 2017, there wasn’t any kid-friendly literature available to help him process the concept of surgery — or even know what to expect.

Michigan Medicine pediatric social worker Matt Butler noticed the deficit after Noah’s mother sought advice on preparing her son.

LISTEN UP: Add the new Michigan Medicine News Break to your Alexa-enabled device, or subscribe to our daily audio updates on iTunes, Google Play and Stitcher.

“I wanted him to know he would have a scar,” says Heather Cohoon, of Swartz Creek, Michigan.

Explaining a transplant to any child is difficult, but this case presented a unique challenge: Noah has CHARGE syndrome, a rare genetic disorder that in his case caused him to be born with kidney failure, deafness and delayed development.

Unable to find anything suitable in his own library, Butler wrote a booklet — complete with clip art — to help Noah better understand his transplant.

That booklet inspired a larger project. In June, Butler and fellow pediatric social worker Tanya Smith published a book, Your Transplant Adventure: A Kid’s Guide to Organ Transplant.

“We took the idea of Matt’s booklet and revised the content to make it universally applicable for any solid organ transplant,” Smith says.

Proceeds from book sales support the University of Michigan Transplant Center, which offered the writing team a grant to enlist artist and early childhood educator Melissa Mueller to contribute illustrations.

"We really walk through the whole process," says Tanya Smith, the book's co-author.

Addressing big questions

To help ease young readers’ worries about the transplant process, the 27-page book asks a question on each left page and answers it on the corresponding page with an original illustration.

One example: Will I have stitches or a scar?

The answer: Your doctor will use stitches or a special kind of glue to help your body heal from the surgery. After the stitches come out, you will have a scar. This will always remind you of how brave you were!

MORE FROM MICHIGAN: Subscribe to our weekly newsletter

Another query tackles the delicate question of the new organ’s origin.

“That picture shows a patient holding a gift,” Butler says. “Whether it’s from a live person or a cadaver, it’s a gift.”

The writing duo spent four months composing the book with input from the transplant team’s clinical psychologist, families and other health care experts.

“We really walk through the whole process of why kids need a transplant, what it means to have a transplant, where a transplant comes from, what it’s like afterwards and how to keep yourself healthy,” Smith says.

Recognizing a need

In the past, hospital systems around the country have asked Smith and Butler if something like their book existed. Both are pleased they could fill the void for families in need.

SEE ALSO: Can My Child Be an Organ Donor? What Parents Should Know

As social workers, they assist patients and their families along the transplant journey, whether it’s addressing the emotional, psychological and social issues related to a transplant or providing resources that help families return to everyday living.

“We make sure the whole family is taken care of,” Butler says.

Butler gave a copy of Your Transplant Adventure to the Cohoons when Noah, now 10, came in for a checkup nearly a year after his surgery.

“It says a lot about the health system that they wrote this book,” Heather Cohoon says. “They are kind, caring and compassionate. And Matt is awesome.”

And the young patient’s reaction was immediate: Noah began signing the word for “yes” as he leafed through the pages, his mother recalls.

“It was amazing how much it helped my family, especially my other children, understand what Noah went through,” she says. “He inspires a lot of people.”

If you or someone you know is in need of a transplant, contact the University of Michigan Transplant Center to schedule an evaluation.

Photos by Nicole Hadley