November 17th is World Prematurity Day and the entire month of November is Prematurity Awareness Month. 

Preterm birth is when a baby is born too early, before 37 weeks of pregnancy have been completed. Current statistics show that 1 of every 10 infants born in the United States is born too early. Babies born too early (especially before 32 weeks) have higher rates of death and long-term medical complications and disabilities. Babies born before 26 week gestation are called Micro Preemies and are likely to have greater complications from their early birth. My daughter Joy is a Micro Preemie. 

(March of Dimes 2024 Report Card)

World Prematurity Day is one of the most important days in the year to raise awareness of the challenges and burden of preterm birth around the world. The day was initiated by the European Foundation for the Care of Newborn Infants (EFCNI) and partnering organizations in 2008. The international co-founders Little Big Souls (Africa) and March of Dimes (USA) joined the celebrations and made World Prematurity Day an intercontinental movement. 

I have been working in the maternal and neonatal advocacy space for over twelve years now, and I honestly say that my work in collaborations with many organizations and individuals has made a powerful impact.

In my work as a member of the Board of Directors for the NICU Parent Network and the NIDCAP Federation International, I have had the honor of collaborating on many successful projects that work to increase the number of positive healthcare outcomes for premature and medically fragile babies, as well as the hospital experiences for their families. 

The NICU Parent Network just published a Position Paper titled “Continuous and Uninterrupted Parental Presence in the NICU.” This was a collaborative project with NIDCAP Federation International, National Association of Neonatal Therapists, National Perinatal Association, National Network of NICU Psychologists and the Family-Centered Care Taskforce. This important document emphasizes the significance of continuous parental presence in the NICU and aims to effectively disseminate this vital information to healthcare professionals, NICU family advocates, and policymakers.

Please see the link HERE to view our Position Paper, as well as the accompanying Social Media Toolkit.  

I also encourage you to take the time to review our first Position Paper on “NICU Parent-Led Peer-To-Peer Support Services,” using the HERE and below. 

Both papers provide valuable insights into the importance of parental involvement in neonatal care and the critical role of peer support for families navigating the NICU experience. Your engagement and advocacy are essential in advancing these vital initiatives for improved care and support for NICU families. Our website also has a large number of resources for medical teams, support organizations and families, including a NICU Baby Bill of Rights, webinars, and more. Just look under the Resources tab.

The NIDCAP Federation International (NFI) has a new online merchandise store. When you purchase one of these NIDCAP branded gifts, you are supporting our mission to improve the future for all infants in hospital and their families with individualized, developmental, family-centered, research-based NIDCAP care. You can see our selection by clicking HERE. We also have several resources available to medical professionals and families, including podcast series, webinars, white papers and more. Take a look at our Resources tab by clicking HERE. 

THe NFI just held their 35th Annual Trainer’s Meeting and Conference during the first week of November, in Toulouse, France. I was unable to attend due to my teaching commitments, but I did participate when possible and have heard from many attendees on how successful the meeting was. Luckily I was there in spirit through a small box on the screen during the discussions regarding the work that our Board of Directors do every day to help us reach our mission for babies and families. I was also able to record a video of myself presenting our new Position Paper (written with NICU Parent Network), referenced above, and the NFI’s new Speakers Bureau. You can watch the video HERE. Please consider using one of our speakers for your next conference, training or fundraising event.

My work on the Leadership Team of the International Neonatal Consortium has allowed me to publish research papers in both the Journal of Pediatrics and Journal of Perinatology, as well as contribute my NICU parent perspective in regards to neonatal clinical research. “The culture of research communication in neonatal intensive care units: key stakeholder perspectives” can be viewed in the Journal of Perinatology by clicking HERE. “Remembering the Power of Stories in Pediatric Research” can be viewed in the Journal of Pediatrics by clicking HERE.

Also, as a co-chair of the International Children’s Advisory Network’s Parent Chapter, I continue to contribute my unique parent perspective in collaboration with many pharmaceutical companies as they plan their clinical trials. iCAN is selling a book that was written and illustrated by their youth members who have experienced participation in clinical trials. It is a wonderful resource for medically fragile children and all you need to do is make a $25 donation and a book will automatically be shipped directly to you. Visit the iCAN website by clicking HERE and scroll to the bottom for more details. 

Let me also share my own resources with you so that you have more tools available for advocacy efforts and support. I wrote and published three books to help others who have experienced a life-threatening pregnancy, premature birth or delivering a medically fragile baby. My first book is a memoir called “From Hope to Joy” and it chronicles my high-risk pregnancy and delivery, my daughters 121 days in the Neonatal Intensive Care Unit and her first 8 months of life after discharge. This book is designed to show families that they are not alone through reading the experience of someone else in similar shoes. You can purchase it by clicking HERE.

My second book is called “Stuck in Bed: The pregnancy bed rest picture book for kids … and moms”, and it is a book about pregnancy bed rest from a child’s perspective. Kids ask a lot of questions, and we try to  answer them with optimism and excitement. You can purchase it by clicking HERE. This book is co-authored with a colleague of mine who is an expert on pregnancy bed rest, Angela Davids. Please visit her website at keepemcookin.com.

My third book is called I Was Small, But Now I’m Tall, and it’s a book for a child who was born prematurely, telling the tale of their earliest days in life in simple terms that kids can relate to. It tells the story of a baby that was born much too early and spent many months in the Neonatal Intensive Care Unit (NICU). This premature baby, like many others, overcame the obstacles that threatened her survival and grew into a strong child. You can purchase it by clicking HERE. 

During National Prematurity Awareness Month, countless additional individuals and organizations from more than 100 countries join forces with activities, special events and commit to action to help prevent premature births, provide awareness and improve the outcomes for premature babies and their families.

On November 17th, join me in wearing purple and checking social media for various postings themed at raising awareness for all of the premature babies born to the world who will have great successes and make great contributions to society, those that are left with complications requiring many medical supports, and those that did not survive their journey. 

Our family is so very lucky that our micro preemie continues to beat the odds and is now thriving at 12 years old- playing soccer and dancing in our local production of The Nutcracker. 

You can watch a video montage that my husband John created to raise money for Maria Fareri Children’s Hospital by clicking HERE. Grab your tissue first!

The world will light up in purple on November 17th, including buildings, bridges and waterfalls. 

(Mid-Hudson Bridge, New York)

(our front porch in purple lights)

(Niagara Falls, New York)

Thank you to everyone who has supported Joy and our family through the years since her extremely premature birth. It has been a rough road, but the support of our loved ones, friends and colleagues has gotten us through.

Please check back for more information and resources throughout the rest of the month. 

(Joy, with her Father’s hand)

(Joy, Day 3 of life, with my hand)

Thank you.