By Vivian Kwok | Reporter
The Louise Herrington School of Nursing is one of the top nursing programs in Texas, and a recent graduate illustrates this excellence. Deb Smith, R.N., published the first children’s book about the common but rarely discussed birth defect called hypospadias. The book is titled “How Down There Bear Got Repaired.”
Hypospadias is a condition where males are born with a “penis that not only doesn’t work well but also doesn’t look normal,” according to the Urology Care Foundation.
Although it is a common birth defect, Smith said she initially felt she was keeping a secret to protect her son’s privacy.
“That cut me off from a lot of support. I felt very alone and that put me in a very bad place for quite some time,” Smith said. “More importantly, it cut me off from information that I wish I would have had prior to his first surgery.”
After her son’s surgery was successful, however, Smith said she decided she could be angry about her son’s experiences or she could help and support others in a similar situation.
“I felt that if I could just help one family, what we went through would be worth it,” Smith said.
With the help of her son, Smith created “How Down There Bear Got Repaired.” Smith said she would actually ask her son questions like “What is a catheter? What is an IV?” and “What would you tell others who were about to have surgery?” She said this was his normal.
“I used a lot of the words that he used to describe his medicine, surgery and feelings,” Smith said. “It was so hard for me to put myself in his situation so his input helped me tremendously with the creation of the book.”
Smith said her son could relate to every page and illustration, and he loves reading it to others.
“He has writer’s workshop in his Kindergarten class, so he was so proud to tell his teacher that he and I are ‘real’ writers,” Smith said.
Delaware, Ohio, R.N. Kimberly Swagler said the book does a great job of explaining the procedures and emotional experiences associated with hypospadias.
“This book helps communicate with toddlers and children directly on a level they can understand, while also helping to introduce some of the people and equipment they will experience during their surgical journey,” Swagler said.
Swagler said her son, who also has hypospadias, loved reading the book as well. She said he had five surgeries before reading it.
“He was able to relate to the experiences DT Bear went through. He frequently pointed out, ‘That’s just like what I did!’” Swagler said.
Swagler said it is important for kids to not feel ashamed, embarrassed or isolated because of birth defects they cannot control.
“It’s so important for kids to be able to talk about their experiences, as well as be able to communicate effectively about their body if something hurts or doesn’t feel right,” Swagler said. “Books like this teach kids how to use the appropriate terms and understand that hospitals and doctors don’t have to be a scary experience.”
Over 100 copies of Smith’s book have been sold in the U.S. and abroad.
“Seeing these copies going to families experiencing this surgery is so incredibly emotional because I know it takes stress off the parents in explaining the surgery to their son,” Smith said. “I think it also helps the kids feel like they aren’t alone and since it outlines every aspect of the surgery and aftercare, it takes a small piece of fear away.”
Smith continues to raise awareness and advocate for transparency about hypospadias. She said she is writing a second book about Down There Bear healing with complications and undergoing hyperbaric oxygen therapy. Smith also hopes to make the opportunity available for kids to have a real Down There Bear to bring into surgery with them.