MAHOPAC, N.Y. - When Jennifer Degl gave birth to Joy eight years ago, little did she know that her fourth child would send the Mahopac High School history teacher on a path to an additional career.
Joy was born seriously premature—a micro preemie— after just 23 weeks. A typical pregnancy is 40 weeks. She weighed just 1 pound, 4 ounces and spent 121 days in the neonatal intensive care unit (NICU). At the time of her birth, she was one of the youngest to be born at Maria Fareri Children’s Hospital in Valhalla.
Jennifer Degl has since become one of the country’s leading experts and advocates for micro preemies and their moms and has now authored three books related to the subject. Her first book, “From Hope to Joy: A Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds,” was well received and led her to speaking before Congress on the issue, as well as being a keynote speaker at the annual National Association of Neonatal Nurses Conference in Palm Springs, Calif., in 2016.
Her second book, “Stuck in Bed: The Pregnancy Bed Rest Picture Book for Kids … And Moms,” won the prestigious Mom’s Choice Award.”
Degl’s third book, “I Was Small but Now I’m Tall,” was released last week and it’s aimed at onetime preemie babies who have grown and want to know more about their birth. (November is National Prematurity Awareness Month and Nov. 17 was World Prematurity Day.) Degl said many children want to know their birth stories and ask questions like, how big was I when I was born, and can I see a picture of me after I was born?
“My first book was for parents going through premature pregnancy,” said Degl, a teacher at MHS for 21 years. “Then I thought kids need support to help them understand what their mom is going through, so I wrote ‘Stuck in Bed.’ Now, this new book is about the baby and how they feel about it as they grow up. They need to know they can grow strong and be successful like any full-term baby.”
Degl said the dynamic is different in every family, but people are more willing to talk about the subject these days even though answering such questions from a child can be challenging.
“It’s hard for parents to discuss and you don’t want to scare the child by showing them photographs of them looking sick with all those tubes and wires,” she said. “I hope this book will help begin the conversation in a positive way.”
Degl said she began work on the book about three years ago, but it took the pandemic to give her time to sit down and fine-tune it.
The reviews have been overwhelmingly positive. Sara Mosher, a registered nurse in a neonatal ICU and president of Patient+Family Care, wrote that Degl “once again succeeds at bringing comforting words and insurmountable hope to families who experience the trauma of delivering a fragile and premature baby. She has created an easy-to-read story with capturing graphics, while skillfully transforming her story into a book that so many other parents and families will be able to relate to and benefit from.”
Kristy Love, executive director for the National Perinatal Association, wrote, “This is a much-needed book to help our preemie children understand how far they have come.”
Degl appreciates the positive reaction. “[The reviews] make me feel good because I provided something to these families that they might not otherwise have,” she said.
Degl will soon be going to Marie Fareri Children’s Hospital—where it all started for her and Joy—to drop off copies of the book for all the parents in the neonatal intensive care unit so they can read to the babies.
“The parents in NICU often can’t touch and hold the baby and now this pandemic adds a whole other level,” Degl said. “When you can’t hold the baby, you read books and sing songs so they can hear your voice.
“It’s been awful for these families,” she added. “I run the mentor program there; it is one-on-one mentoring where we moms talk to parents from a peer perspective. But we have been shut down since March and there are no volunteers allowed. I know they are struggling.”
Degl said that of her three books, this new one is her favorite.
“It will help a child when they grow up and [explain] what they went through and what they can become,” she said. “That they were different from the average baby.”
Jennifer Lynn Baker, who illustrated “Stuck in Bed,” returns to illustrate “I Was Small but Now I’m Tall.”
“It is a very similar design and format; they were kind of designed as a set,” Degl explained. “She is quite talented.”
Degl said friends and family members have encouraged her to keep writing.
“I do this for them and to help other families who are experiencing this,” she said. “It was not easy to make lemons out of lemonade, but I have been trying to take my traumatic pregnancy and my daughter’s premature birth and turn it into a learning experience that I can share with others to support them. We all need a little support sometimes.”