A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
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 it’s 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.
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.
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.
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.
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 about 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 in 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!
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.
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 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.
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.
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.
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.
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.
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 judgement. 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.
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.
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.
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.
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.
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 it 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 it’s 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!
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!
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?
Last weekend I had the honor and pleasure of being a Keynote Speaker at the 32nd Annual NANN Conference.
NANN stands for the National Association of Neonatal Nurses.
The conference was held in Palm Springs, California at the Renaissance Palm Springs and the weather was beautiful. But what was more beautiful were the NICU nurses I got to meet and spend time with.
For those of you who don’t know what NICU means- it’s the Neonatal Intensive Care Unit. This is where my daughter, as well remainder of the 10% of babies born prematurely every year, spend their first few weeks or months of life.
Before I discuss what I was speaking to them about, I want to explain what special people these NICU nurses are. These women (and some men, too!) not only help the neonatologists resuscitate our babies and keep them alive immediately after their premature births, but they do so much more.
According to study.com, the duties of a NICU nurse include administering medications, monitoring vital signs and providing vital nutrients to newborns. Because most premature and sick newborns’ lungs are not fully developed, NICU nurses must ensure that infants are breathing and maturing properly. These specialized nurses work with upper-level nurses and neonatologists and assist in treatment plans and examinations. They also keep, maintain and update records of the patient’s care. In addition to medical care, NICU nurses communicate with and educate parents on day-to-day operations as well as home-care procedures.
I can tell you that description only scratches the surface of what NICU nurses actually do for babies and their parents.
These angels on earth, as I like to call them, will hold our babies if we cannot be there; they will comfort them when they cry; they will sing to our babies to put them to sleep; as well as bath them and change their diapers- tasks that we wish we were doing ourselves, but are all too often not able to do because of our baby’s fragile (and often our own) medical conditions.
Most NICU nurses go above and beyond to make sure our babies are safe, happy and thriving. And NICU nurses often become our baby’s advocates when necessary- as far as the medical plan goes.
This is why it was an honor and privilege to be a Keynote Speaker at their conference.
Four years ago, after delivering my own premature baby at 23 weeks gestation, I was thrown into an unknown world of neonatal care. The NICU nurses soon became my teachers, friends and family.
We were tasked with sharing our own personal NICU experience and then offering advice on how the NICU nurses could make the discharge process emotionally easier on parents and how nurses can best help the parents prepare for discharge.
Both Natalie and Kara have their own journeys with prematurity and you can visit their websites (linked to their names above the photo) to read about them. They are two of the most beautiful women I know and I am lucky to have shared this experience with them. I’m in awe by their strength and determination!
Our Keynote Closing Session began with the President of NANN (Jean Grazel) discussing the importance of the parents in the NICU process. Jean Grazel is a certified advanced practice nurse with more than 30 years of neonatal nursing experience. She holds several clinical designations, including board-certified high-risk perinatal nurse, neonatal resuscitation program regional trainer, NANN neonatal developmental care specialist, and certified breastfeeding counselor. You can read all about Jean by clicking HERE. Then Heather Goodall (MSN, RNC-NIC, IBCLC) set the stage for our presentation and read each of our biographies to the audience. Heather also moderated the question and answer session at the end of our presentations. You can see the general outline for our presentations by clicking HERE.
What touched me the most was that all of these NICU nurses put aside time in their day and made it a priority to come to watch us speak- the parents of NICU babies. We (the parents) owe everything to these people and have the upmost respect for them- and yet they wanted to listen to us speak and offer them advice on how to help us more.
Overall, my experience as a Keynote Speaker at the 32nd Annual NANN Conference was both amazing and humbling. I got to share the stage with two other beautiful and strong NICU mammas, and I got to see first- hand how these NICU nurses really want help the family as a whole. They are not only concerned with saving and caring for our premature and medically fragile babies, but they also want to make sure that we all leave the NICU with as little bruises as possible.
There is no way to leave the NICU unscathed by our experiences after watching our babies (and often ourselves) endure so much pain and suffering, but I learned that the NICU nurses are always looking for newer and better methods to minimize it for us all.
Once again, NICU nurses are angels on earth!
Oh, and since I was in Palm Springs for the weekend, of course I took in some of the local sites! What kind of science teacher would I be if I didn’t visit the San Andreas Fault, Joshua Tree National Park and the mountains of San Jacinto State Park?
It’s a rhetorical question. Lol!
But seriously, if you have a story to share about a NICU nurse going above and beyond to make sure you have the best NICU experience and discharge possible, I would love to hear it. I have SO many!
Please share in the comments 🙂
Below is the reason I feel so passionate about raising awareness about premature births and NICU life.
Thank you your support!
World Prematurity Day is coming up!
November 17 is World Prematurity Day (WPD), a chance to raise awareness about the topic of prematurity on local, national and international level.
One in ten babies are born premature. That’s over 15 million babies being born too early each year.
How did World Prematurity Day start?
EFCNI (European Foundation for Care of Newborn Infants) initiated the first meeting of the European Parents’ Organization in Rome, Italy in November 2008. During this meeting, the representatives decided to create an awareness day for preterm infants and their families. November 17th was chosen because this day has a very special and emotional meaning for one of EFCNI’s founders: After the decease of his preterm triplets in December 2006, he became father of a healthy born daughter on November 17th 2008. At the same time- the March of Dimes in the United States had a similar idea and launched Prematurity Awareness Month in November.
World Prematurity Day has been growing and spreading awareness ever since.
There are many different organizations hosting events in honor of World Prematurity Day and National Prematurity Awareness Month.
If you are on Facebook, please check out the World Prematurity Day page where you can learn what’s going on.
Also, visit the EFCNI website where you can get great advice on what you can do to support World Prematurity Day and even get templates and toolkits to help you support it.
Preemie World is a wonderful organization that highlights all things related to premature births and they will be sharing all kinds of great stories and ideas to help you support World Prematurity Day.
On a local level, here are some things I am doing in honor of World Prematurity Day:
1. You can gift a copy of my book (From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds) to a preemie parent or even send an autographed book to a NICU. Click below to learn more. I’ll even wrap it in purple paper for you.
Click here to view the offer: http://micropreemie.net/gift-a-book/
2. Give a gift of hope to a parent of a premature baby. Below is a $5 discount code you can use to purchase my book (From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds) throughout the month of November.
Website link: https://www.createspace.com4347606 Use code: 6P9FLKVU
3. An Affair to RememBeer at Two Roads Brewing Company in Stratford, CT.
On November 13th The Morgan Leary Vaughan Fund is hosting a fundraiser which includes beer tasting, brewery tours, hors d’oeuvres, live music, raffles & a silent auction. All event proceeds will go directly to supporting our Natural History Registry for Necrotizing Enterocolitis (NEC). NEC is a deadly disease of the intestines that effects premature babies.
I’m proud to say that I am a member of The Morgan Leary Vaughan Fund’s Board of Directors and they do great work!
Click HERE to purchase tickets or donate:
4. I’m speaking at the NANN (National Association of Neonatal Nurses) Conference in Palm Springs, CA on October 29th. I’m discussing what did and did not help me, as a preemie parent, at the time of NICU discharge. I’ll be writing a post on this in early November.
5. I’m exhibiting at the PPA (Preemie Parent Alliance) Summit in Falls Church, VA during the first weekend in November. More on this this to come…
Even if you can’t attend an event or donate to a nonprofit in honor of World Prematurity Day- you can still put purple lights on your front porch to show your support.
And if you do light up your house in purple, please tag me in your posts by using @jenniferdegl. I would love to see your photos.
How are you celebrating World Prematurity Day and why do you celebrate it?
Here’s why I celebrate World Prematurity Day:
IT’S BEEN 4 YEARS SINCE MY MICRO PREEMIE CAME HOME FROM THE NICU!
Today is a special day for our family. It’s difficult to believe that 4 years has already passed since that beautiful (and frightening!) day when Joy was released from the NICU.
She (actually all of us) has grown so much in the past few years and I’m not just talking about her size. Joy has become her own person. Obviously she was always her own person but she has developed her own personality. She tettertots between a princess (and she even wears a tiara on most days!) and a tomboy- as she plays with her three big brothers as if she were a knight or Jedi fighter. Although they always include her in their play, they also always treat her like the princess that she thinks she is.
Life has gotten dramatically busy this year, as her brothers are now engaged in more activities and sports, and even Joy started to take dance classes- which is why my writing has been reduced to a crawl. But a lot of the reason that I have not been writing very much is because we have all been healing. It took almost 4 years for it to happen, but we are all finally coming to terms with my life threatening pregnancy and death scares and Joy’s very early and very dramatic birth at 23 weeks gestation.
Her premature birth was caused by a condition called placenta percreta (a severe type of placenta previa)- a condition that caused my placenta (the organ that’s supposed to keep my baby safe and provide her with nutrients) to grow through my uterus and attach to both my bladder and bowels. It caused us both to almost lose our lives.
So, it was 4 years ago today (September 9, 2012) that my miracle micro preemie came home from the NICU. Joy Margaret Degl spent 121 days at Maria Fareri Children’s Hospital and grew from 11 ¾ inches and her preemie birth weight of 1 lb. and 4 oz. to her discharge weight of 7 lbs. and 9 oz.
A few days before her discharge, Joy had a choking episode which caused her to stop breathing and turn blue. Although I had just taken the infant CPR course offered by the hospital, I still froze when she choked. Joy’s nurse stepped in and got her to breathe again and I just watched. Because of this I took the infant CPR class again the next day!
September 9, 2012 was filled with mixed emotions. Of course we were all excited to have Joy come home and join our family, but we were also very nervous about the amount of special medical care and numerous appointments that our preemie may require. But most of all, I had gotten very used to the comfort of knowing that a doctor or nurse was always available to check on Joy and make sure that she was okay. That comfort was now being removed and I now had to rely on my husband and myself only. That was scary!
Joy would go on to have a visiting nurse come to our house 3 days a week to check her breathing and weight because she needed to avoid the germs at the regular pediatricians office. She began Physical Therapy and other various interventions which were all done at our home throughout the course of each day, as her brothers were sitting in school.
We needed to see the gastroenterologist on a biweekly basis because of her acid reflux and trouble with digestion. Joy was closely followed by a pediatric ophthalmologist because she was diagnosed with ROP (Retinopathy of Prematurity) and the list goes on, but let’s return to the feelings on discharge day- 4 YEARS AGO!
In addition to being nervous, I had become VERY close to many of the bedside nurses that took care of Joy. Most days involved me going to the hospital between 9 am and 3 pm, while the boys were in camp and then going back at night between 9 pm and 1 am again while the boys slept. Because of this, I got to know both the day and night nurses and I was going to miss them. That may sound strange, but these women became my social life. I knew more about which ones were redecorating their houses or what their children had for breakfast than I knew about my own friends and extended family. Now all of this was being taken away from me.
On the morning of discharge, Joy’s brothers were eagerly anticipating our arrival. My in-laws and my parents had helped them make beautiful signs and cards and helped them hang balloons both inside and outside of our home. It looked absolutely beautiful and it was a surprise to both my husband and me.
We were so blessed that Joy did not come home on oxygen or require any other medical equipment and she was returning home one week after her actual due date, just as if she were a regular newborn. One would never know the difference- unless you saw her daily medical and intervention schedule.
September 9, 2012 was filled with some laughing and crying, but mostly excitement about our future. After saying goodbye to our home of the last four months (the NICU), we entered a new phase of our lives in our actual home. Joy slept in her car seat during the entire trip home in the car and then for a little bit more when we got in the door. We put Joy’s car seat, with Joy asleep in it, on the dining room table after we got home and we all stood around it staring at her until she woke up. Joy was home and everything was as it should be!
The first 1-2 years post NICU is a big blur. I mostly remember the constant appointments and stress over hand sanitizing, limiting the visitors to our home, Joy’s 5 bouts of pneumonia (now it’s 8), and the fear of her not surviving her first year of life- or the thought that she may have so many developmental delays that she may never enjoy her life. But in the mix of all that, I have memory flashes of the first time she rolled over and crawled, the first time she walked (Christmas Eve 2013 at 19 months old), the first time she kissed me and how her brothers would hold her and sing to her.
Wow, our life today is so different than it was just 4 years ago!
Although Joy’s entrance into this world was such that I would not wish it on anyone else, I am so blessed that she entered just as she did. Since her birth my 3 boys have learned how to be compassionate and patient (although they slip from time to time like us all!), and I have found a new passion. I have begun to spread awareness about the realities of premature births and life with a preemie and very much enjoy speaking to and on behalf of premature babies and NICU families across the country.
In late October I’m honored to be speaking at the NANN (National Association of Neonatal Nurses) Conference in Palm Springs, CA and then I’ll be off to the PPA (Preemie Parent Alliance) Summit in Falls Church, VA.
Thanks for your support and for following Joy’s journey and my writing over the last 4 years!
We both thank you.
On Wednesday, June 22nd I spoke at the Cannon House Office Building In Washington D.C. to encourage Congress to support a bill called H.R.5182, nicknamed The Support the Promoting Life Saving New Therapies for Neonates Act.
The goal was to highlight the dire need for innovation for the American newborn population. I was joined by a panel of experts with unique backgrounds and experiences in “preemie” health, who discussed these issues with the hopes of a bipartisan House solution that may someday save thousands of young lives.
Our expert panel consisted of Dr. Jonathan Davis (Chief of Newborn Medicine and Professor of Pediatrics at Tuffs University School of Medicine), Dr. Christina Bicci-Rechtweg (Head of Pediatric and Maternal Health Policy at Novartis Pharmaceuticals), and Allyson Kayton (Nurse Practitioner and member of NANN and NANNP). We spoke for over an hour to a room of top congressional staffers about the details of bill and the compelling reasons to support it.
After the briefing was over, we each had appointments with some members of Congress from our home states so that we could discuss the bill in a more personal fashion.
So, what’s the problem that H.R. 5182 is trying to address?
Annually, approximately 200,000 newborns in the United States require admission to a neonatal intensive care unit for treatment of prematurity. Prematurity is the leading cause of newborn mortality and the second leading cause of infant mortality. Among those who survive, one in five faces health problems that persist for life such as Cerebral Palsy, intellectual disabilities, Chronic Lung Disease, Short Bowel Syndrome, blindness and deafness. But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population, due to numerous challenges.
Few drug-labeling changes have included neonates (premature and full term infants up to 28 days of age); and the last new drug for neonates was approved in 1999.
Many of those who follow my story are already familiar with my personal journey with prematurity.
My daughter was born at 23 weeks gestation in 2012 and weighed just 1 pound and 4 ounces at birth. She was only 11 ¾ inches long.
After a long and difficult 121 day NICU (neonatal intensive care unit) stay, my daughter was released from the hospital to our care.
Although she is doing amazingly well at 4 years old, she has Bronchial Pulmonary Dysplasia (BPD) or what is commonly called Chronic Lung Disease. Her lungs are primarily scar tissue because that is how they formed due to the several months of a breathing tube and ventilator forcing her tiny lungs to open and shut, because she could not breath on her own.
This scar tissue and Chronic Lung Disease are what causes her to get frequent pneumonia after having a common cold.
She has had pneumonia 8 times throughout her short 4 years of life and she will likely continue to get it when exposed to foreign respiratory viruses or the runny noses of other children.
Wouldn’t it be wonderful if a new drug was developed that could somehow coat the lungs of premature babies so that they do not develop scar tissue and the future premature babies of the world would not have to suffer with Chronic Lung Disease for the rest of their lives, as my daughter does?
Wouldn’t it be wonderful if a new drug could be developed to prevent the immature intestines of premature babies from getting infected, causing a deadly disease called Necrotizing Enterocolitis (NEC), and the future premature babies of the world would not have to suffer major surgeries and loose their lives due to NEC?
I think so, and I hope you do too.
Many people don’t understand that a premature baby is not just smaller than a full-term baby. Premature babies have immature body systems with a totally different body chemistry than full-term babies. What this means is that because they were not meant to operate in the outside world for a while, they work differently and medications used to treat pediatric and full-term babies do not metabolize the same way in a premature baby. Many drugs don’t work as well or they have different negative side effects in premature babies, because of the immature body systems and different body chemistry of babies born far too early.
Also, the most debilitating conditions and diseases that afflict premature babies do not have an adult counterpart to study, because they are unique to neonatal patients. Therefore, the common practice of “dosing down” a medicine to a smaller weight, which is used to treat a “similar” pediatric or adult disease, does not work well because the diseases of neonatal patients are not the same.
Today, I am calling on you to write to your local member of Congress to encourage them to support the bill. Please click HERE to do it.
It’s so important. The need is there and the population of babies surviving extremely premature births, like my daughter did, is only increasing.
We need new drugs to help prevent these tiny babies from living with debilitating conditions and diseases for the rest of their lives.
They deserve that.
So, please write to your local member of Congress today by clicking HERE.
As always, thank you for your support!