I joined the NIDCAP Federation International in 2017 after attending their annual NIDCAP Trainers Meeting in Edmonton, Canada.
NIDCAP stands for Newborn Individualized Developmental Care and Assessment Program and the NFI stands for the NIDCAP Federation International.
When babies are born too early or medically fragile, they are forced to spend the first months of their lives in a hospital, instead of in the comforts of their home. In the Neonatal Intensive Care Unit (NICU), these babies are kept in a plastic box and attached to tubes and wires, all of which make them extremely uncomfortable. Many of these tiny babies also experience a great deal of pain due to medical procedures and surgeries. Research shows that the NICU stimuli may interfere with a baby’s normal neurological development, and can cause a myriad of issues as the child grows.
My daughter was born at 23 weeks gestation in 2012 at just 575 grams (1 lb 4 oz) and was not even as long as a ruler. She spent 121 days in the NICU and endured more pain and medical procedures than most healthy adults experience in their entire lifetime. I would have given anything to reduce her pain and keep her comfortable during her time in the hospital. The practices of NIDCAP and the NFI would have been so helpful to me back then, if I only knew they existed.
While my daughter had excellent care during her four months in the NICU, I was very much a bystander. I watched from the sidelines as her medical team changed her diapers, washed her and performed many basic care activities that I now know I could have been a part of. It wasn’t until a week or so before her discharge that I was able to really begin to care for my baby. As a seasoned mother of three boys, this was so upsetting to me because I had been used to caring for my babies myself, and I felt as if I was failing my daughter and not bonding with her as I should have been. I didn’t even feel like her mother.
My daughter was just over one month old when I got to hold her for the first time. This kangaroo care session took about 20 minutes to set up, and even though it only lasted for approximately 5 minutes before she was desatting and the nurses took her off of me, it was this moment that my motherly instincts kicked in and I finally felt our bond.
Our experience during her first month of life has always haunted me. I wish I was able to hold her sooner, comfort her when she was in pain and participate in her care activities from the very beginning. We were strangers to each other and the hospital staff was her “mother” for the first few months of her life. While I will always be grateful to them for saving her life and caring for her, I will never get over the guilt of not participating and bonding with my daughter from the beginning.
These feelings of guilt and the trauma associated with my high-risk pregnancy and premature birth is what compelled me to write a book about our experiences. I wanted other families who were suffering through a similar situation to know that others have walked in their shoes and are now flourishing. Publishing the book opened up a whole new world to me and I slowly moved into advocacy and have traveled the country sharing my story and our family’s experiences to create positive changes in both maternal and neonatal health. This is how I learned about the NFI and NIDCAP. Another family advocate for NIDCAP contacted me and shared what the organization is about. It immediately seemed like a perfect fit.
The goal of NIDCAP is to ensure that, one-day, all infants and families in intensive and special care nurseries will receive individualized and developmentally supportive family centered care. This is what I wanted for my daughter and wish for future premature and medically fragile babies.
The 2017 Trainers Meeting was so impressive that I decided to become involved in any way that I could. You can read my blog post on that meeting by visiting https://www.speakingformomsandbabies.com/nidcap-trainers-meeting-2017/.
NIDCAP has graciously taken me in and I have slowly been getting to know many of the other members. I am looking forward to sharing my experience and time with NIDCAP and I hope to contribute to advancing their reach.
I am a proud member of NIDCAP Federation International.
March 20, 2019 we will be celebrating the first World NIDCAP Day. Please visit the NIDCAP website at www.nidcap.org to learn more about what NIDCAP has to offer and how they support healthy development of newborn babies.
-Jennifer Degl
Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms and Babies, Inc., that aspires to spread awareness and educate the public on maternal and neonatal health issues. She is also the author of two books, an active member of The International Neonatal Consortium, the Preemie Parent Alliance, and NIDCAP Federation International, and she serves on The Board of Directors of The Morgan Leary Vaughan Fund, which is dedicated to preventing Necrotizing Enterocolitis in premature babies. Jennifer also regularly contributes articles to various online communities including Huffington Post Parents and The Mighty. You can learn more about Jennifer at https://www.speakingformomsandbabies.com.