2016 Preemie Parent Summit

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.

The first weekend of November was very exciting for members of the Preemie Parent Alliance (PPA) because we had our Annual Summit in Falls Church, Virginia.

It was also a nice distraction from the presidential election!

But in all seriousness, November is National Prematurity Awareness Month and November 17th is World Prematurity Day so the timing of the PPA Summit could not have been better.

Inova Children’s Hospital was gracious enough to allow our organization to take over its main conference space to hold our PPA Annual Summit. They even gave us guided tours of their new state of the art NICU (Neonatal Intensive Care Unit). It’s a beautiful hospital.

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(Inova NICU)

What is the Preemie Parent Alliance (PPA)?

The Preemie Parent Alliance (PPA for short) is a network of organizations offering support to families of premature infants. To ensure best outcomes for preemie families, the Preemie Parent Alliance is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support. As a national network, we are establishing a unified parent voice to advocate for infants, who cannot speak for themselves, and their families. Together, we represent thousands of NICU and bereaved families across the country.

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(Me with Kelley French- author of Juniper and Deb Discenza of Preemie World)

The PPA is committed to providing opportunities for emerging preemie parent leaders to enhance their leadership skills, improve support for families, and increase their involvement in all facets of healthcare policy, care guidelines, advocacy, and education.

Click HERE to learn about the PPA Members and what organizations they represent.

What is the PPA Summit?

The Preemie Parent Summit is the only two-day event focused on organizations supporting families in Maternal Infant Health, a field of healthcare long dominated by professional provider associations & legislators. About 90% of attendees are founders and executive directors of NICU parent support organizations from across the United States. Our members work in local, regional, and national capacities with NICU families along the continuum of care from high-risk pregnancy to life after the NICU. The remainder 10% of our audience is made up of other Maternal Infant Health stakeholders, providers and industry leaders.

Preemie Parent Alliance

What happens at the PPA Summit?

The PPA Summit is the place where preemie parents, directors of support programs, preemie product innovators, authors and stakeholders all assemble to learn ways to better serve the NICU population and community, as well as collaborate on how this can be done by making partnerships and alliances to further our common goals.

PRE-CONFERENCE

The PPA Summit Pre-Conference included “The Advocacy Training Workshop” and “Training the Trainers: How to Equip Your Organization’s Peer-to-Peer Mentors Utilizing Best Practices”.

“The Advocacy Training Workshop” was hosted by the National Coalition for Infant Health and it was very helpful to me to learn how to better spread awareness of the issues I feel are important. Since I have spoken at a few Congressional Briefings in Washington D.C., and I hope to continue to do so, it was advantageous for me to participate in this workshop. You can read about my experiences speaking to Congress HERE and HERE.

 

“Training the Trainers” was hosted by Lisa Grubbs of NICU Helping Hands and the goal was to teach leaders and members of NICU Parent Mentor Support Groups the skills and tricks on how to better prepare their mentors to give the support needed to help NICU parents. The group also discussed how to work with the NICU nurses and neonatologists better so that more parents can be reached. Although I did not sit in on this session, I heard it was very good!

After the Pre-Conference workshops, we all gathered at the Hyatt House Hotel to attend the “Welcome Reception” and networking activity. We were asked to sit with another member of a different organization and speak about what we do and what we would like help with- as far as making our reach and impact more successful. It was fun!

DAY 1

Our next day began with opening remarks from Keira Sorrells (President of both the PPA and the Zoe Rose Memorial Foundation). She always sets the tone of the Summit and reminds us all why we are sitting together.

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(Keira- President of PPA)

Next, our Keynote Address was done by Theresa Nguyen of Mental Health America. She discussed the necessary task of self-care and how we can guide other preemie parents to take a little time to themselves and reboot so that they are better prepared to handle the roller coaster of the NICU.

After a short break, Shawnee Bigelow (President and Founder of The Starling Company) spoke to us on how to build alliances and form coalitions with other organizations so that we all reach the most parents and hospitals possible. She had some great advice!

Before lunch, we assembled to listen to “Perspectives in Neonatal Health: Research, Legislative & Industry Panel”, hosted by Carolyn TenEyck of Prolacta Bioscience, Darby O’Donnell of Alliance for Patient Access and Lisa Klein of Inova Translational Medicine Institute. We all learned a lot about what’s being done on the research and industry side of neonatal health, as well as the legislative side.

Preemie Parent ALliance

(The panel)

After lunch we were separated into Breakout Tracks, split into two different rooms. I attended “NICU Expert Podcasts: Filling the Informational Gap of Preemie Parents”, hosted by Stephanie Vaughan (President and Founder of The Morgan Leary Vaughan Fund– of which I am a proud member of their Board of Directors). I was honored to introduce Stephanie and talk a little bit about what The Morgan Leary Vaughan Fund is and how we have raised money with the goal of research into treating and ultimately preventing Necrotizing Enterocolitis (NEC) in premature babies.

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(Stephanie Vaughan)

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(Jeff Bradbury on Skype)

Once of the newest projects that The Morgan Leary Vaughan Fund recently completed is a podcast series called “Speaking of NEC”. It’s a series of interviews with relevant NEC experts (both physicians, nurses and parents) where various aspects of Necrotizing Enterocolitis are discussed. Stephanie shared how she created the podcast series and she also had the producer (Jeff Bradbury of JeffBradbury.com) Skype in to assist. This 12 episode podcast series can be found HERE on The Morgan Leary Vaughan Fund’s website and also on iTunes.

Preemie Parent Alliance

(Me and Stephanie of The Morgan Leary Vaughan Fund)

Unfortunately, I could not attend the other Breakout Session at the same time, but I heard that Dr. Sue Hall was inspirational when speaking on “A Roadmap to Improving Your NICU”. Many people left there with new ideas and heightened motivation to bring back to their hospitals.

Our last informational sessions for the day were also Breakout Sessions and I had to choose one to attend. I decided to attend “Pregnant Women, Drug Use & NAS: Separating Fact from Fiction” hosted by Erika Goyer of the National Perinatal Association. It has always been an interest of mine. During my daughter’s 4 month stay in the NICU, I witnessed many babies born addicted to various types of drugs and listened to them cry. Some were never held by their mothers and were discharged to Social Services. It always broke my heart and I have been searching for answers as to why this happens. Erika gave an eye-opening discussion on the real issues and what those of us involved in the NICU can do to help these babies and their parents.

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(Erika of National Perinatal Association)

Because of my choice of Breakout Session I had to miss “Funding Your Mission” by Jennifer Sharp of Bazelon Center for Mental Health Law. This was a great choice for leaders of nonprofits and I heard that it was very helpful.

Our day ended with a beautiful ceremony called “Celebrating Our Babies” where each attendee had a bag with a lit candle and was asked to “Celebrate” their preemie’s life- no matter the length.

Preemie Parent Alliance

(photo by Gigi Khonyongwa-Fernandez)

It really was a beautiful sentiment. I found myself in the same position as I often do, with a type of “Survivors Guilt”. While I am so very blessed that my daughter Joy is with me today, and without any major complications from her premature birth, I often feel guilty about sharing her/our success story when in the company of so many parents who grieve the loss of their premature baby. This is something that I struggle with, and have written about in the past, but in the supportive environment of the PPA, I had no worries about judgment. Not with this beautiful group of people.

That evening we celebrated our friendships and efforts over a casual but delicious dinner (and drinks!) at Paladar Latin Kitchen and Rum Bar. We had a chance to unwind and gear up for the next morning.

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(Most of our attendees)

DAY 2

Our last day opened with a “PPA Members Only Meeting” where Shawnee Bigelow from The Starling Company asked us to evaluate our membership and what we are doing to form alliances with other organizations and what we may want from the Preemie Parent Alliance.

Next Jenne Johns (author of Once Upon a Preemie) talked to us about “Health Disparities, Equity and Cultural Competency in the NICU: Challenges and Opportunities”. She gave us some great information on how to better help NICU who may not be represented well in the NICU and are in need of support.

Once Upon a Preemie

(Me and Jenne Johns)

I have to add that Jenne recently published a children’s book titled “Once Upon a Preemie” and it’s wonderful! I had the pleasure of spending some time with her during the Summit and I cannot wait to collaborate more with her. Check out her book! You can find it HERE.

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Before lunch, we once again had to choose Breakout Session and I attended “Allies After the NICU: Alone We Are Rare, Together We Are Strong” with Mary Midolo of The Morgan Leary Vaughan Fund (Morgan’s Fund) and Melanie Gibson of the National Organization for Rare Disorders (NORD). I once again had the pleasure of introducing the speakers and sharing some of the work Morgan’s Fund has done with NORD. Mary and Melanie spoke about the partnership (alliance!) that Morgan’s Fund and NORD has made to create The Living History Registry for patients diagnosed with Necrotizing Enterocolitis (NEC) and how this partnership and project with help many future babies and adults who have been diagnosed with NEC. Maybe it will even help figure out ways to predict and prevent it in the future! That would be great! The registry should go live in December so stay tuned to www.morgansfund.org.

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(Mary Midolo from The Morgan Leary Vaughan Fund)

The Morgan Leary Vaughan Fund

(Melanie from NORD with The Morgan Leary Vaughan Fund)

The Breakout Session I was unable to attend was called “Social Media: The Digital Watercooler” and it was hosted by Haley Steinkuhler of Connected Forever. I was told that the attendees learned how to use social media to further their goals for their foundations and reach more NICU parents.

After lunch we all attended “Perspectives in Neonatal Health”- a panel discussion involving Robin Baker (Inova neonatologist), Sara Donahue (March of Dimes NICU Family Support), Lynn Hardy (Innova NICU Nurse and Educator) and Christine Tran (Inova NICU Social Worker) and moderated by Danielle Bischoff (Preemies Today). It was host to a lot of engaging conversation on how to better support NICU parents and better take care of our neonatal population as a whole.

Preemie Parent Alliance

(Danielle from Preemies Today and GiGi from Families Blossoming)

Our last session was called “Navigating the Education System as a Preemie Advocate” by Tracy Pella (Connected Forever). Here Tracy spoke to us about how to make sure we call got the necessary services for our children. She taught us about education reform and law and where to look for the resources and support we need to best serve our babies as they grow through school.

That’s it in a nutshell! Except the Annual PPA Summit was more than just a series of lectures and breakout sessions. It truly was a place to meet with old friends and make new ones, as well as a safe place to speak to people who understand what it’s like to have a premature baby and navigate the NICU life and post-discharge life. It was also a place to cry and laugh and form new alliances.

What is the PPA’s Mission? Great question…

The Preemie Parent Alliance (PPA) stands alone as the only national network of support organizations serving families who find themselves with a critically ill infant in the Neonatal Intensive Care Unit (NICU). Our unique member organizations are all led by parents who have had the traumatic experience of giving birth to a baby weeks before they should have, in a manner they did not expect. To ensure best outcomes for preemie families, the Preemie Parent Alliance is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support.

I think the PPA successfully works towards its mission each and every day.

I have to mention that the PPA Summit would not be possible without Cristal Grogan. She is the woman behind the scene who runs it all. Thank you, Cristal!

Preemie Parent Alliance

(Me and Cristal)

I also want to thank the planning committee: Danielle Bischoff (Preemies Today) Tanya Clay (Hand to Hold), Deb Discenza (Preemie World), GiGi Khonyongwa-Fernandez (Families Blossoming), Cristal Grogan (NICU Helping Hands), and Julie Howard (Northwest Printed Apparel). They worked tirelessly to make sure the event was a worthwhile experience for all.

I have to thank Keira Sorrells (President of PPA) for her efforts to keep the summit going each year and ensuring that our presentations are engaging and relevant to all of the PPA members and attendees. She works for the success of each PPA Summit- all while simultaneously maintaining the Zoe Rose Memorial Foundation. Thank your Keira!

The Morgan Leary Vaughan Fund

(Little Giraffe’s Foundation and The Morgan Leary Vaughan Fund)

And last, I’d like to thank every person and organization that attended the PPA Summit because it would not happen without attendance; Connected Forever, Courageous Steps, Eli Collins Foundation, Families Blossoming, Graham’s Foundation, Hailey’s Hope Foundation, Hand to Hold, Holding Tiny Hands, Keep Em Cookin, Lily’s Hope Foundation, National Perinatal Association, Little Giraffe Foundation, NICU Helping Hands, National Coalition For Infant Health, NEC Society, University of Utah Hospital,  Pebbles of Hope, Preemies Today, Preemie World, Project Sweet Peas, The Morgan Leary Vaughan Fund, Will’s Way Foundation, The Tiny Miracles Foundation, Jenne Johns (author of Once Upon a Preemie), Kelley French (author of Juniper), and me Jennifer Degl (author of From Hope to Joy).

I can’t wait until next year’s PPA Summit. Where will it be held?

Please visit the PPA website to learn how you can get involved or join.

How are you spreading awareness for World Prematurity Day today?

Jennifer Degl

(my table)

PPA

(Hailey’s Hope Foundation and Angela from Keep Em Cookin)

Jennifer Degl

JENNIFER DEGL

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.

 

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