Vol. 7, No. 5
June 2015

Book tells newborn screening story from sibling’s perspective

A new children’s book that tells the story of a boy with a hereditary condition as seen from his brother’s point of view was unveiled May 20 at Wartburg College. “Our Special Family” was written by Waverly resident and Wartburg alum Kelsey Baker.

Gathered to celebrate the publication of “Our Special Family” are (from left, back row) Nick Baker, husband of the author; author Kelsey Baker; and illustrator Emma Theide. In the front row (from left) are Eli and Brody Baker who were the inspiration for the new book.

Baker and her husband, Nick, have two young boys, ages 2 and 3, one of whom was screened positive for Biotinidase deficiency by the Iowa Newborn Screening Program. Biotinidase deficiency is an inherited condition caused by the lack of an enzyme called biotinidase, which normally allows the body to recycle biotin. Biotin is essential for normal metabolism. Early treatment with biotin supplementation results in normal growth and development.

The Iowa Newborn Screening Program is administered through the Iowa Department of Public Health. The Hygienic Laboratory provides the laboratory support for the program, and the University of Iowa Children’s Hospital provides the necessary follow-up communications with physicians and families whenever a baby receives a screen positive result for any of the conditions screened for by the program.

“A family is like a puzzle,” Baker writes in her book. “The pieces look somewhat alike but each one is different. Every person is a very important piece to make our family complete – just like putting together puzzle pieces to make a special picture.”

Baker worked closely with Wartburg student Emma Thiede, who illustrated “Our Special Family.”

In addition to discussing the process of making the book, Baker discussed the impact of newborn screening on her family, advocacy for children and families with special needs, and using literacy as a tool to discuss important issues.

“This book is important because it highlights how children are born with their own uniqueness,” said Baker. “These differences are viewed as blessings to be celebrated. Children learn valuable lessons from each family member because of both their similarities and differences.”

As a school psychologist in northeastern Iowa’s Area Education Agency 267, Baker works with families whose children may have learning differences or health concerns.

“I see many families like ours,” Baker said. “One of the children has a disability or deficiency and the other sibling does not, which creates unique family dynamics. Children may not understand why a sibling may require more time, treatment and attention. This can be troublesome for children. Therefore, I was inspired to use literacy addressing family issues from a child’s perspective.”

Biotinidase deficiency is one of more than 50 conditions that can be detected through newborn screening using only a few drops of blood collected within the first days of life. If left undetected and untreated, these conditions can have a profound impact on a baby’s life.