Written by: Jaclyn Pederson
In a world where many things compete for a parent’s attention, one area that commonly rises above all the noise is the well-being of their children. This month I would like to call attention to two of the many wonderful awareness efforts that merit the time and attention of parents everywhere, even if you’ve not personally been impacted, odds are that you know someone who has been.
September is NICU Awareness Month, designed to honor the experience of families in the NICU and of the health professionals who care for them. Every year 10-15% of babies spend time in the neonatal intensive care unit (NICU). Few families are prepared for the strain that is experienced as they watch their babies fight for their lives. In the US, the rate of preterm birth has increased by 35% in the past 25 years. Preterm birth is defined as a live birth before 37 completed weeks gestation. Babies born too soon are often born too small. While the causes of preterm birth and low birthweight vary in some cases, there is often significant occasion for additional medical interventions needed within these populations of infants. (source)
Equal parts heartbreaking and triumphant is how many parents struggle in the attempt to feed their children during these medically uncertain times while in the NICU and beyond. This season of desperation to help their child receive nourishment reminds us that there is magnificent power in human resilience but that inside of parenthood, there is really only ever the illusion of control.
Another cause that is close to my heart which has influence on and relationship with the many feeding challenges a NICU family might face is Pediatric Feeding Awareness which is celebrated in May. More than 1 in 37 children under the age of 5 in the US annually experience Pediatric Feeding Disorder, which is more than the number of children with cerebral palsy or with autism. PFD is not rare. Many of those represented in the PFD population were born prematurely and/or spent time in NICU.
Pediatric feeding disorder (PFD), specifically, is defined as impaired oral intake that is not age-appropriate and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. If we break this down a bit further, pediatric feeding disorder is when a child is unable to eat the quantity or variety of foods needed for sound nutrition, growth, and mealtime participation that other children their age can eat. PFD results in medical, nutritional, feeding skill, or behavioral problems and mealtimes can be very stressful for the entire family.
But, there is hope and support on the often dimly lit journey. Find resources and community through either of these great organizations.
JACLYN PEDERSON, MHI
Chief Executive Officer
With more than a decade of experience in program development, Jaclyn Pederson’s broad knowledge of programming in the public and social sectors includes program and strategic initiative design, fund development, special events, grant writing, and community engagement. A system thinker and positive team builder, she uses transformational leadership principles to develop energized and efficient workgroups that influence significant organizational and systemic change for all affected by pediatric feeding disorder –such as the development of the expanded PFD Alliance. Jaclyn also manages Feeding Matters’ strategic partnerships with numerous professional associations including American Speech-Language-Hearing Association (ASHA), American Society of Parenteral and Enteral Nutrition, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).