MAHOPAC, N.Y.— Little did Mahopac High School teacher Jennifer Degl know that when she gave birth to her daughter, Joy, four years ago, an amazing and uplifting journey awaited her.
Joy was born seriously premature—a micro preemie— after just 23 weeks. A typical pregnancy is 40 weeks.
“At the time, she was one of the youngest to be born at Maria Fareri Children’s Hospital (in Valhalla),” Degl said. “There’s been a handful at 22 weeks since then.”
Joy, albeit with some minor complications, is healthy now and doing well. Degl credits the staff at Maria Fareri for that and she has been an ongoing advocate for the hospital and the plight of preemie babies ever since.
She penned the book, “From Hope to Joy: A Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds.” Earlier this year, she was asked to testify before Congress, pushing for better health care for at-risk babies.
Last weekend, she was invited to be a keynote speaker at the 32nd Annual NANN (National Association of Neonatal Nurses) Conference in Palm Springs, Calif. The conference is held close to World Prematurity Day, which is Nov. 17 each year. It’s a day to remember all babies who lost their lives because of premature births, honor those babies who are dealing with the consequences of a premature birth and celebrate babies who have overcome despite the odds against them. In fact, November is National Prematurity Awareness Month.
At the conference, Degl was part of a “Parent Panel” that consisted of herself, Natalie Gordon of NICU (Neonatal Intensive Care Unit) Helping Hands and Kara Wahlin of NICU Healing. They were tasked with sharing their own NICU experiences and offering advice on how the NICU nurses could make the discharge process emotionally easier on parents and how nurses can best help the parents prepare for discharge.
“What touched me the most was that all of these NICU nurses put aside time in their day and made it a priority to come to watch us speak— the parents of NICU babies,” Degl said. “We, the parents, owe everything to these people and have the utmost respect for them and yet they wanted to listen to us speak and offer them advice on how to help us more.”
Degl called it an “amazing experience.”
“These nurses become your family,” she said. “They do everything for your baby that in most cases you can’t do. They sing to your baby; they hold your baby; they comfort your baby. They really are amazing people.”
But it’s not just the babies who the NICU nurses support.
“They also support the parents because you’re a mess,” she said. “They talk to you and comfort you. They take all the medical procedure stuff and put it into easy to understand terms. So, it was an honor [to speak] because they are who we look up to. To give them advice was a privilege and humbling.”
Degl said the goal was to offer suggestions and advice on things the nurses do well and what they should do more of, as well as some of the things they can learn from and improve upon.
“We talked about what kind of programs they could develop and make the discharge process the easiest,” she said. “After you are discharged, the nurses don’t know what happens to your baby and there are no follow-up programs.”
Degl said the reaction from the nurses was overwhelming.
“They came up and said they appreciated what we said because they don’t get that advice enough,” she said. “We got a standing ovation at the end, which was kind of a shock.”
Degl’s book, “From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds,” is available at Amazon and Barnes and Noble and at www.fromhopetojoy.com. For more information and resources on premature births, and to spread awareness surrounding World Prematurity Day, and to follow Joy’s progress, visit www.micropreemie.net.