Written by PPA member Jennifer Degl, author of From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds, this wonderful walkthrough of our 2016 Summit can be found at www.micropreemie.net.
It’s not every day that one gets to be in the same room with so many people who share the same goal of figuring out how to help premature babies and their families. Many heads can accomplish much more than just one and I believe many great ideas and alliances came out of both of these conferences.
Today I’m sharing my experience at the PPA Summit, and I’ll write another post about NANN later this month.
Although I arrived slightly late to the PPA Summit’s opening reception, it did not prevent me from having a great first impression. Everyone welcomed me as if I knew them all for years. In fact, I had only met a few of the PPA members before this year’s summit and it was actually the first time I had conversations with the majority of the group.
Keira Sorrells (co-founder of the Preemie Parent Alliance) gave the opening remarks at the Welcome Reception. A few things she said struck me as very significant. In my own summary of her words, Keira suggested that our PPA membership, an organization made of parents of premature babies, had the power to create tangible changes in the way we care for premature babies and their families in our country. We can use our combined skills and voices to enact change in hospital policies, protocols and even influence the legislatures that govern our babies and how they are treated.
Who better to speak for our babies, then the parents who love them more than words can describe?
Keira has her own very powerful story on how she became involved in such a cause. She is the founder and president of The Zoe Rose Memorial Foundation. The Zoe Rose Memorial Foundation provides emotional support, educational resources, and awareness focused events, which inspire hope in parents of preemies while in the NICU, post discharge and for those who have suffered a pregnancy or infant loss. Keira and her husband Richard gave birth to triplet girls at 25 weeks gestation and although she fought for many long months, their daughter Zoe did not survive. You can read about The Zoe Rose Memorial Foundation HERE.
Keira has made it her life mission to spread as much awareness and help as many preemie parents as possible, by reaching out to other organizations that support premature babies so that they could combine into the Preemie Parent Alliance. By design, the Preemie Parent Alliance encourages each organization to help each other and together these organizations could have a farther reach.
I joined the Preemie Parent Alliance in 2013 and I have already learned so much! Please click HERE to learn more about the Preemie Parent Alliance and what they do.
Day 2 started early- with a 7:45 am shuttle to Methodist Dallas Medical Center. Once registration was complete, we all sat down to begin our day. Each year the PPA Summit has a theme. This year’s theme was “Innovation and Sustainability: Future Trends for Fragile Families” and it was about the how we address the needs of our growing population of premature babies as both the technology and family demographics are changing rapidly. I believe the summit lived up to its theme.
We all participated in a networking activity that was very valuable to me. Each conference attendee was able to request a 10 minute meeting with another attendee and there were 3 scheduled meetings. I was lucky enough to sit with Cheryl Chotrani from Pebbles of Hope, Cassandra O’Neill from Wholonomy, and Allison Epps from 22w6d.
Cheryl Chotrani is an inspiration to me because of the aspiration she has for her organization. She is a media specialist with goals of using technology to help babies born prematurely in under-served areas survive and thrive through parent education. I am looking forward to working with her and Pebbles of Hope in the future!
Cassandra O’Neill gave me several ideas on both how to increase my success in setting up a parent mentor program at my daughter’s NICU and also how to branch out into doing more public speaking with the goal of spreading prematurity awareness.
Allison Epps has an amazing story. Her son James was born at 22 weeks 6 days, before the allowable resuscitation gestation, due to her accidentally giving the hospital staff the incorrect due date. Many US hospitals do not regularly resuscitate babies born before 23 or even 24 weeks gestation. Allison’s son James was saved due to a mistake and now she has made it her mission to change hospital protocol to allow other babies to be saved at earlier gestations if the parents make that choice. I got to meet James and he is a wonderful and happy little boy. Click HERE to read about 22w6d.
I was honored to host a Lunch Forum called “Journaling Through Trauma” in which I facilitated discussions on why it is so important to keep a journal while your baby is in the NICU. You can view my “Take Away Points” by clicking HERE and you can also view my online presentation (which I share with various NICU staff and support groups) by clicking HERE.
Other forum hosts were Cheryl Chotrani (Pebbles of Hope) who guided a discussion on how the media can be used to help combat prematurity and increase infant health; Sheila Gephart (NEC Zero) who talked about her self-developed early warning system used to detect NEC (Necrotizing enterocolitis) and other ways to prevent it; Peter Goodman (International Business Times) who discussed how to reach the media and use it as tool to spread awareness; Holly Gray (Hacking Disabilities and NICU Helping Hands) who facilitated a table discussion on “Simple Marketing Strategies”; and Yamile Jackson (Nurtured by Design) who discussed how her ergonomics and human factors engineering training allowed her design two amazing products (The Zaky and the Kangaroo Zak) used to promote developmental care for NICU babies. Yamile is trying to get hospital staff to recognize the need for more comforting and nurturing care of babies and she’s advocating for kangaroo care soon after birth.
Deanna Fei was the summit’s Keynote Speaker and she did a great job putting into words what it’s like to parent a micro preemie both during and after their time in the NICU. Due to circumstances out of her control, Deanna was forced into the spotlight and her daughter’s story made public. Because of this, and her background as a writer, Deanna felt that she had to write a book about their story and it’s called “Girl in Glass”. I read Deanna’s book a few months back and I have to admit that it took me a long time to read it because so many of the moments she skillfully put into words, were very similar to my daughter’s birth story and I had to put it down several times due to getting very emotional. I would recommend “Girl in Glass” to any preemie parent who may be reading this, as it is comforting to know someone else has struggled with the same circumstances and emotions as you are likely experiencing as you read this. HERE is a link to her book on Amazon.
Many excellent presentations were given on several topics. I particularly liked the examples given by Cassandra O’Neill on how to reach our dream goals for our organizations, products and support groups. Cassandra caused me to reflect on the goals I have for myself, as far as a volunteer in the many organizations I work with, but also allowed me to dream of what I would like to accomplish as an individual- looking to make change in the ways we treat premature babies and their families.
Other Day 2 presenters were Amy Vickers of The Mothers’ Milk Bank of North Texas and Dr. Erin Hamilton Spence (Neonatologist in Pediatrix Medical Group) who both spoke alongside Jennifer Canvasser (Founder and Director of NEC Society) about nonprofit collaboration and how they can enhance effectiveness; and Dr. Sue Hall (who discussed the importance of psychosocial support for NICU parents).
The NEC Society is a nonprofit organization dedicated to reducing the incidence of NEC (Necrotizing enterocolitis). Jennifer Canvasser’s son Micah tragically lost his battle to NEC after fighting for several months following his premature birth. You can read about his story HERE and see how she has tried to turn her personal pain into a positive way to help others.
Dr. Sue Hall is a neonatologist at St. John’s Regional Medical Center in Oxford, CA, where she moved after serving for several years as the Medical Director of the Stormont-Vail Healthcare NICU in Topeka Kansas and the author of “For the Love of Babies”, published in 2011. She is on the Board of Directors for the National Perinatal Association, where she is now active in promoting support for parents of NICU babies. Her presentation was called “Recommendations for the Psychosocial Support of NICU parents.” Dr. Hall is advocating for better preparation and mentoring of parents while their babies are in the NICU and also after discharge. Her presentation was particularly interesting to me, as well as inspiring, as I am in the process of setting up a NICU parent mentor program at Maria Fareri Children’s Hospital in Valhalla, NY. Click HERE to visit Dr. Hall’s website.
Tuesday night was fun as we all headed to dinner at a local Mexican restaurant in downtown Dallas. The food and margaritas were delicious and we all got to unwind from a busy and emotional day.
Day 3 began with another shuttle ride from the Magnolia Dallas Hotel to the Methodist Dallas Medical Center. Upon arrival, Stephanie Nobels-Beans gave her presentation on “Breaking Barriers and Crossing Lines” which discussed how we should all work together to bring about change, peace and harmony. Stephanie runs a home for homeless women and children. She is known for saying “People are not looking for a hand-out; they are looking for a hand-up.” Stephanie is the founder and Executive Director of Fields of Diamonds House of Blessings.
Suzanne Smith from Social Impact Architects gave a very thought provoking and engaging presentation called “Storytelling in the Social Sector” where she discusses how nonprofits and other organizations/companies can create a real, scalable impact through social media. Everyone wanted more from Suzanne when she was done speaking! Luckily we can visit her website (HERE) to see all of the resources and advice that she has to offer.
Katie Reginato-Cascamo was next and she discussed “Servant Leadership: Recognizing and Revolutionizing Your Leadership Paradigm”, where she talked about the different types of leaders and made us all think about what type of leader we were and what type of leader we wanted to become. Although I don’t run an organization, I have been a teacher for over 17 years and this presentation caused me to think about the ways in which I guide my students through the learning process. Katie’s presentation also allowed me to imagine the type of leader and model I will be as the head of the parent mentor program I am setting up at my daughter’s former hospital. Katie is the Organizational Development Consultant for Hand to Hold and you can click HERE to see the wonderful work they do to help NICU babies and their families.
The last speaker before lunch was Dr. Martin Lee of Prolacta Bioscience. Prolacta is the pioneer in standardized human milk-based nutritional products for premature infants in the NICU. They have developed an entirely human milk-based fortifier for breast milk; so that premature babies are get the benefits of human milk while upping their caloric intake and this allows these fragile babies to avoid formula. There is research supporting how exclusively milk-fed babies have lower instances of infections, including NEC (Necrotizing enterocolitis). Dr. Lee gave a very informative and engaging presentation on the research being done to increase survival rates of premature babies by using human milk-based products.
After another educational and fun Lunch Forum in which I got to speak to several people on the importance of “Journaling Through Trauma”, a panel was set up on the main stage to discuss the summit’s hot topic. This hot topic was titled “The 9%: Why Offer Resuscitation to 22 Week Infants”, and it was very emotional for many of us. The panal consisted of Allison Epps of 26w6d, Dr. April Bleich (a Maternal Fetal Medicine specialist from Fort Worth, TX), Natalie Gordon of NICU Helping Hands, and Dr. Erin Hamilton Spence. The discussion was focused on the growing debate on whether or not to resuscitate babies born at 22 weeks or earlier and how much different hospitals differ on their policies.
This presentation was very difficult for me to sit through without having my own flashbacks of conversations with doctors both prior to and shortly after my daughter’s 23 week birth. After having my first life threatening hemorrhage at 17 weeks pregnant, I was told to abort my baby because she would most certainly be born a micro preemie and her quality of would be very low, if she survived at all. These conversations repeated themselves again during the following 3 hemorrhages (each threatening my life) as I was being transfused with blood trying to save both of our lives. I was forced to speak to several doctors who all felt the same way. Ultimately, my last hemorrhage caused me to deliver my daughter as a micro preemie, as warned, and although we both needed many life-saving measures and procedures, we are both here today to show that each pregnancy and each birth cannot fit into the same box.
While unfortunately many mothers and babies will not be as lucky as we were, there are mothers and babies that survive and thrive after a micro preemie birth experience and more research needs to be done; and protocol needs to be developed to allow the parents to participate in the decision to begin life saving measures or to just begin comfort care. With medicine and technology advancing, and the fact that several studies show that babies born at 23 weeks are not developmentally behind 24 weekers by Kindergarten age, it may be possible for the same to be said for 21 or 22 weekers in the future. This presentation caused me to realize how although over three years has passed since my daughter’s birth, I can still remember the feelings and conversations with medical staff as if it were last week. I wonder when that will stop.
Gretchen Lawhon of NIDCAP Federation (Newborn Individualized Developmental Care and Assessment Program) gave the last presentation of the PPA Summit. It was certainly last but not least! Gretchen was an engaging speaker who with over 25 years experience as a NICU nurse. She discussed all of the ways in which hospitals can incorporate more developmental care into their practices. She is quoted as saying “The Baby is the Boss” and agrees that we should not wake a sleeping baby to perform routine tasks unless it is medically necessary, as babies develop and heal the most when they are asleep.
Gretchen continued to reinforce that babies should be held skin-to-skin as soon as possible and it does not need to wait until the baby is entirely stable. I found this important because I did not get to do hold my daughter skin-to-skin for over a month after her birth and it has always bothered me; thinking how she did not feel my love and support and that no one was comforting her when she needed it the most. That being said, once they allowed me to do it, I never put her back! Gretchen even mentioned that some hospitals in The Netherlands are doing intubations and extubations while the baby is on mom’s skin. That is impressive! Why not do painful procedures on the babies while they are the most comfortable and likely to feel less pain?
I was lucky enough to get to speak to many of the other summit attendees in-between sessions or during dinner time. They include Andy Male (author of “Go Preemies“); Tracy Pella (Co-Founder and President of Connected Forever; Kathleen Mills from Fragile Beginnings; Nick Hall (Co-Founder and President of Graham’s Foundation); Kelli Kelley (Founder and Executive Director of Hand to Hold), Tanya Clay (Program Director of Hand to Hold, and Erika Goyer (Education director of Hand to Hold); Bob Shelby (Executive Director of Holding Tiny Hands); Julie Howard (Founder of It’s a Preemie Thing); Kristy Love (Director of Operations for National Perinatal Association) and Lisa Grubbs (Founder and President of NICU Helping Hands).
Unfortunately Leelee Klein (President of The Tiny Miracles Foundation) was not able to attend the summit after planning on coming and it was our loss! I have known Leelee for a few years now and I can say that she would have had a great deal to contribute to each discussion. Leelee is an asset to all start-up nonprofits as she has been very successful with her own and has helped countless families of premature babies in Connecticut.
Many PPA members and organizations could not make it to this year’s summit for various reasons and other commitments. They are The Morgan Leary Vaughan Fund (which I am on The Board of Directors and proud of it!), Little Giraffe Foundation, Eli’s Hope, Families Blossoming, Keep Em Cookin, Minnesota Preemies, Preemie World, Kasey Mathews, The Tangerine Owl Project, Teenie Preemie, The Foundation for Prematurity, Preemies Today, and Skyler’s Gift Foundation. I wanted to mention them in the hopes that we can encourage them to attend next year. Every member has their own prematurity story and experiences that can be shared to help the Preemie Parent Alliance extend their reach- with the goal of helping as many families and babies as possible.
I also want to thank the sponsors of the PPA Summit, as it would not have happened without them. So, a big thanks goes out to Prolacta Bioscience, Medimmune, Epic, Medela, Invictus Medical, AstraZeneca, Your NICU Baby, and Methodist Dallas Medical Center.
Extra special thanks go to Cristal Grogan, who is the creative technology expert behind the PPA and the summit. Cristal works behind the scenes to make sure all of the summit’s digital needs are met and she does a great job at it!
I am already looking forward to next year’s PPA Summit.
Where will it be?
East Coast? Just sayin’- LOL!
AUTHOR OF FROM HOPE TO JOY & BLOGGER FOR HUFFPOST PARENTS AND THE MIGHTY
Jennifer Degl started a journal the night her micro preemie was born. Weighing in at just 1 lb 4 oz, the birth of her fourth child and only daughter, appropriately named Joy, changed her life forever. Five months later,
instead of writing in her journal, she sat down and read every page. That’s when she knew she had to tell their story.
In her memoir, Jennifer recounts the struggles and triumphs of her journey: from the decision to have a fourth child, through the four life-threatening hemorrhages she survived, to the birth of her micro preemie at 23 weeks gestation, and her daughter’s fight to survive.
As a seasoned public speaker and author, Jennifer is in the midst of her 18th year as a high school science teacher in New York and she is eager to share her experiences as a preemie parent. She will speak at any event for organizations raising awareness of or money for research being done to prevent premature births, treatments for medical complications of premature births, or families of premature babies.