A few months ago, in April 2019, I had the honor to speak at the 2019 National Association of Neonatal Therapists Conference, or NANT 9. It was an amazing experience, and I got to travel to Wild Horse Pass in Phoenix Arizona to do it.

The theme of NANT 9 was “Passion and Perseverance”, and that is exactly what I took away from the conference.

The brochure of the conference is still available at: https://s3.amazonaws.com/nantconference2019/downloadables/NANT-Conference-Brochure.pdf

My presentation was the very last one, on the very last day- so I guess I could consider myself the closer. That being said, I was totally surprised when I stood up on the stage at the end of the very last day and saw a room that was completely filled. There were hundreds of people sitting there (despite the sunny/80°F day outside) waiting to listen to me share my story- the parent perspective- on what it’s like to suffer through a high-risk pregnancy and deliver a premature baby who is sent to the NICU.

Wow!

This group of neonatal therapists are some of the most passionate and dedicated group of people that I know. I spoke at NANN (National Association of Neonatal Nurses) a few years back and I got the same impression of them. The NICU nurses and therapists love their patients and their parents and truly want to learn ways to serve them better and improve the NICU experience for the whole family. This was apparent to me as soon as I walked up on stage to a full room.

My presentation was called “How Persevering Through a Life-threatening Pregnancy and Premature Birth Turned into a Passion for Neonatal Advocacy and Education and How My Experience Can Help You Better Understand NICU Parents.” It’s a long title but explains exactly what I talked about for 50 minutes.

I’ve have always felt like NICU therapists (physical therapists, occupational therapists, feeding therapists, speech therapists, respiratory therapists) are my heroes. They not only made life better for my daughter while she was in the NICU, but they taught me what to do after discharge so that I could continue her progress. Some of her NICU therapists are still in our lives today- 7 years after her NICU discharge.

The conference itself (NANT 9) was truly inspirational. I cried during the very first presentation and a few times thereafter, as I listened to therapists share both their stories and frustrations related to their job, as well as recommendations on how to improve care for future NICU babies. You could see the love for their profession in every single presentation.

The president of NANT, Sue Ludwig, is a beautiful person both inside and out. NANT is her baby and she has mothered and nurtured it so well, that there are thousands of members from all over the world. These therapists have been inspired by her work and her mission of uniting all groups of neonatal therapists so that they can all support each other and also collectively make recommendations on how to improve NICU care for babies.

Of course there was a little time for socializing, too!

There was a Welcome Reception on the first night and a group dinner and lunch for attendees to get to know each other and make connections.

The Keynote Speaker was Dr. Jan Brunstrom-Hernandez, MD and her presentation was titled “Finding Purpose, Rediscovering Hope: not merely living with cerebral palsy, but learning to live their best”. This presentation brought me (and many others) to tears. She was amazing, and so were the 25 plus other presenters throughout the conference. The conference planning team got this agenda right!

I also found a little time to explore the dessert area of Wild Horse Pass at the Sheraton in Phoenix. The property is beautiful. I have always loved the dessert and I thoroughly enjoyed walking the trails and learning about some of the local wildlife and native american history. The pool was pretty great, too!

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I am so glad that I was chosen to speak at NANT 9 and I am just as happy to share a few of my presentation comments:

• “Very moving and a HUGE reminder to continue to share knowledge and answer questions over and over again, knowing that families asking the same questions are not because they aren’t listening or engaging but potentially dealing with a variety of other issues impacting their ability to maintain/integrate your message”
• “Her presentation helped open my eyes to the amount of pain and suffering families go through throughout the whole experience from pregnancy to birth to being a NICU parent. I also enjoyed listening about the ways to communicate to families”
• “The journey shared by this amazing survivor was quite moving, scary, heart wrenching, fearful, hopeful and ultimately “”JOY”” -ful. I appreciated to have a speaker who could provide the experience. The lens of the parent can be so completely far fetched from what our personal view as the therapist is, leaving room for open gaps, poor communication and misinterpreted information. Thank you Jennifer! I will think of you and this lecture when doing my absolute best to provide the best NICU Experience!”
• “What an amazing gift this woman has. Her ability to share her family’s story and connect and empower us as therapists was phenomenal. I felt like I really want to work to better think of the lens the parent views us with and what I can do to help in the parents journey on our unit”
• “EXCELLENT! The bravery and vulnerability to share her story was a true gift to us all listening”

It seems as if everyone found value in my presentation and even loved it. This warms my heart. It warms my heart not because I think that highly of myself, but because the conference attendees clearly value the parent perspective and what NICU parents can contribute to NICU care design. They feel that the parent voice is important and necessary to improve care. This makes me smile

I also sold out of every single book that I brought with me! It’s humbling that so many attendees want to read my story and use it to support families.

Not many people, other than the NANT members would want me to post the whole presentation, since it is an hour in length, but I linked the first 21 minutes on my Youtube Channel. I do hope you’ll watch a bit of it and follow me on Youtube to see what new projects I’m working on.

Check out my Youtube channel at: https://www.youtube.com/jenniferdegl

I would love to speak at a future NANT conference and I encourage all of the NICU therapists reading this blog post to sign up for NANT 10. I hear it’s gonna be great!