From Hope to Joy

A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds

I recently had the pleasure of being part of the Prolacta Bioscience Education Day and Facility Tour in City of Industry, CA. in late January of this year. Many of the participants flew in from various locations across the United States and the group was made of up assorted careers and stakeholders- all of which have an interest in helping our most fragile patients- premature babies.

As most of the great ideas of the past began, the idea of Prolacta Bioscience began with a few like-minded and passionate people sitting around a dining room table discussing ways to help premature babies thrive.

They had a vision and were able to take their dream and turn it into a reality. This reality is something that many parents across the country are thankful for today.

Prolacta Bioscience, Inc. is the pioneer in standardized human milk-based nutritional products for premature infants in the neonatal intensive care unit (NICU). Prolacta believes that there is no adequate replacement for human breast milk and, as such, they believe infant nutritional products should be human milk-based. As a privately held, for-profit and scientifically driven company, committed to improving premature infant nutrition, Prolacta is using human milk to change the standard of care in the NICU.

In premature infants, breast milk feeding is associated with reduced infections and inflammatory diseases such as Necrotizing enterocolitis (NEC). NEC is a very serious disease where the intestinal tissue is injured or begins to die off and then a perforation occurs that allows bacteria and waste products to enter a baby’s blood stream. This very often leads to surgery requiring sections of the bowel to be removed and in many cases (about 40%) can lead to death. Human milk holds the power to reduce many of these cases.

For the first time in over six years, the American Academy of Pediatrics (AAP) has issued a policy statement regarding breastfeeding and the use of human milk. Their recommendations include a reaffirmation of exclusive breastfeeding for the first six months; use of human milk for all preterm infants, whether mother’s own milk or pasteurized donor human milk; and human milk should be fortified, with protein, minerals, and vitamins to ensure optimal nutrient intake for infants weighing less than 1500 grams at birth.

Prolacta Bioscience takes these recommendations very seriously.

They are the only company that provides standardized donor human milk fortified to a minimum of 20 Cal/fl oz and provides an average of 1.1 g protein/100ml. Moreover, they are they are the only company that provides a human milk-based fortifier essential for these tiny preemies. Their breast milk has a two-year shelf life supported by real-time stability studies. They also offer the only donor-matching program that tests for common drugs of abuse, nicotine or other “adulterations”. They screen all milk for HIV-1, HCV and HBV by polymerase chain reaction (PCR).

Here is the kicker- the type of analysis/testing that puts Prolacta Bioscience ahead of their competitors- far ahead!

Wait for it…

They store the DNA of all breast milk donors and are able to guarantee that mothers who were removed from the donor list for various reasons (drugs, alcohol, and other adulterations) cannot simply “try again” at a later date and donate milk in the future. Once you are removed from the donor program you cannot donate again and no one else can ever donate your milk under another name because they can match it to your specific forensic DNA profile. This protects all recipients from receiving human milk that was donated by someone who had unfit milk in the past.

You may be wondering why I attended the Prolacta Bioscience Clinical Discussion and Facility Tour.

First, I am a member of the Preemie Parent Alliance (PPA for short). Our Organization 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. PPA is a proud supporter of Prolacta Bioscience and their mission to make human milk available to all premature babies.

(Prolacta hangs the NICU Parent’s Bill of Rights- developed by the Preemie Parent Alliance)

Second, I am a member of The Morgan Leary Vaughan Fund’s Board of Directors. The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately cure NEC. I am a proud member of Morgan’s Fund and our mission fits in quite well with the goals of Prolacta Bioscience. We look forward to supporting all of Prolacta’s future research.

There is one more reason that I became interested in what Prolacta is doing. I have been teaching the secondary sciences at my local high school for over 18 years and all of this stuff is just plain fascinating!

Our day began with a delicious breakfast where Dr. Martin Lee (VP, Clinical Research and Development) and Dr. Victoria Niklas (Chief Medical and Scientific Officer) spoke to us about how Prolacta started, what they do, products they offer, and what they have accomplished since inception.

Right away I felt a vibe that you don’t often feel when visiting an industrial corporation. Everyone loves their job! From the people that spoke- to the people you passed in the hallways or chatted with in the labs- they all enjoy working at Prolacta and believe in what they do.

There is something to that.

Many Prolacta employees have a personal connection to a premature baby and that seems to motivate them even more. I can’t think of a better group of people to work on ways to improve the standard of care in the NICU, can you?

After our breakfast we were schooled on just how much effort goes into the guaranteeing the quality and safety of all Prolacta products. Scott Eaker (VP and Director of Quality and Regulatory Affairs) gave an impressive presentation on how they operate.

Next we learned about how the donor milk program works during a presentation by Raoqi Dulman (Director of Business Development). Since I already explained how detailed their milk donor screening process is, I will not do it again- but I will say that the processes they have in place puts Prolacta’s donor milk ahead of any other donor milk program out there, as far as quality and safety.

After after the presentations were done we were broken up into two groups and escorted around the facility. Joe Fournell (VP of Operations) was the leader of my tour. He was a great guide and he also has a connection to a premature birth.

The building is so clean that you could eat off their floors, although you are not allowed to eat in any other room but the conference room, for sanitary purposes. Lol!

Prolacta even has their own reverse osmosis water filtration system that they use just to clean any instruments that their products touch. They don’t add any water to their breast milk but they wanted to be sure everything is sanitary so they built their own water filtration system to ensure it. That’s pretty impressive!

The labs themselves far surpass any other science lab I have been to- and I have been to many as a career science teacher who takes a chemical engineering class each summer in various pharmaceutical companies on the east coast. The procedures in place and methods they use to guarantee that their donated breast milk is not only free from bacteria and viruses, but is also completely unsullied by anything from the lab, is downright amazing!

All employees who handle breast milk or other materials used in their products must be fully covered in gowns, gloves and masks. They look more like Hazmat inspectors than scientists working on human milk, but you can be sure that nothing is getting past those suits.

All labs are kept at a very cold temperature so that the milk remains stable. Because of this, many of the employees walking around in the lab areas are wearing snowsuits and winter gloves under their gowns. This is to ensure the quality of all of their human milk products.

What I also thought was incredible was how the coolers of breast milk are handled once they arrive. Each cooler is put in a window that is sealed on both sides and only one side can be opened at a time. This ensures that any outside dust or particles (but I did not see ANY- ANYWHERE!) cannot get sucked into the lab due to a draft or wind tunnel, and it also keeps the temperature at a constant refrigeration temperature. Once a mother’s cooler enters the lab side, a sample is taken from EACH cooler and tested for various diseases, bacteria, and viruses. EACH cooler of milk from EACH mother is also tested for opiates, tobacco, and a number of other substances that a mother could have in her system. They call this type of milk “adulterated” and they will not use ANY milk if any of those substances are found in the breast milk. I explained a lot of this earlier but it’s so impressive that I had to mention it again.

Each conference room and science lab has photos of babies hanging up and many rooms are named after babies that were successful and thrived because of using either Prolacta’s donor milk or a product made from Prolacta’s donor milk. It was beautiful to see so many success stories hanging up and I am sure that this motivates the employees each and every day.

Our tour ended with a Q & A session over lunch after a brief presentation from Scott Elster (CEO of Prolata Bioscience). He is pretty entertaining!

A shuttle took us back to our hotel where we had a few hours to rest before our networking dinner. It was nice to be able to sit and have some casual conversation with so many people who share the same goals and who feel just as much of a drive to help premature babies thrive.

Prolacta Bioscience is also participating in some very cutting edge scientific studies at the moment- looking into how human milk and it’s products can help with other diseases and disorders afflicting all types of children and not just premature babies.

One such study is in full-term babies diagnosed with single ventricle physiology (sometimes called a “single ventricle defect” or “single ventricle anomaly”). This is a disease where the babies functionally have only one heart ventricle (most of us have two). Typically these babies require corrective surgery within the first week or so of life. These babies are similar to premature babies in part because their heart condition renders them unable to take in large amounts of fluid, so feeding them sufficiently enough to allow them to grow is a challenge. This study is investigating whether the approach that has been proven successful in preemies of using a human milk-based fortifier modified to meet their particular needs will be able to deliver enough additional nutrition to allow these babies to grow and recover from their surgery faster than they currently do.

Prolacta is also conducting another exciting study in children between six months and five years old who require a bone marrow transplant. This study is testing whether the use of a human milk-based product to deliver a portion of their nutrition will have effects both on the bacterial population of their guts and on their immune systems, such that the rate of occurrence of a serious complication called graft-versus-host disease will be reduced.

I can’t wait to hear about these results and I wonder about the plethora of other medical issues that can be addressed by the science of human milk in the future. I’m sure that the scientists at Prolacta Bioscience are already brainstorming about it!

Well, I will finish with once again saying how impressed I was with Prolacta Bioscience and I feel honored that I was invited to participate in their Education Day and Facility Tour.

They even left a gift for me in my hotel room! And look at my view!

For more information on Prolacta’s cutting edge research in the field of human milk and to learn more about their donor milk program and products, please visit http://www.prolacta.com.

Click HERE to watch an exclusive “Behind-The-Scenes” video about Prolacta’s state-of-the-art human milk processing facility.

I hope I”m invited back for another event in the future!

I am once again proud to be a member of The Morgan Leary Vaughan Fund’s Board of Directors because today we sponsored our second education lecture at UConn Health in Farmington, Connecticut entitled “Influence of Gut Bacteria and Human Milk on Neonatal NEC”, as part of their Pediatric Translational Research Seminar Series.

Today’s lecture featured two of our Scientific Advisory Board members: presenter Dr. Michael Caplan and host Dr. Adam Matson. Stephanie Vaughan (President and Co-founder of The Morgan Leary Vaughan Fund) gave a heartfelt introduction into why she started The Morgan Leary Vaughn Fund and how Necrotizing Enterocolitis (NEC) has affected her family since her twins were born prematurely six years ago. You can read Stephanie’s story HERE.

Stephanie’s introduction was followed by Dr. Michael Caplan’s educational (and entertaining!) lecture on how human milk and probiotics may be helping to reduce the amount of premature babies afflicted with NEC.

In premature infants, breast milk feeding is associated with reduced infections and inflammatory diseases such as Necrotizing enterocolitis. NEC is a very serious disease where the intestinal tissue is injured or begins to die off and then a perforation occurs that allows bacteria and waste products to enter a baby’s blood stream. This very often leads to surgery requiring sections of the bowel to be removed and in many cases (about 40%) can lead to death. As more and more babies are surviving births at earlier gestations we must take a larger look into how to prevent this devastating disease and give our future premature babies a better chance at survival.

Dr. Caplan took us through the history of NEC and some of the original studies regarding different theories on what causes NEC and some ways it was treated in the past. He then showed us evidence from various clinical studies on how human milk diets and exclusive human milk diets (including fortifiers made from human milk) are showing some promise reducing the number of cases of NEC in premature babies. Dr. Caplan also showed us some studies on how probiotics are influencing the number of cases of NEC, but he was very careful not to endorse any particular strand or combination of probiotics as they all can have negative side effects because the physiology of each and every baby is very different.

Dr. Caplan endured quite a trip after canceled flights and long Uber rides to get to us and we are very thankful he came. He even showed up with a smile!

Below are a few of Dr. Caplan’s slides for you to view so that you get a feel of what was being discussed.

The Morgan Leary Vaughan Fund was proud to sponsor today’s event at UConn Health and we look forward to future collaborations.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately cure NEC.

Please stop back and visit www.micropreemie.net and morgansfund.org to see what events are coming up next and please share with anyone who may find this valuable.

Thank you for your support!

Below is a guest post by preemie mom and writer/blogger Carrie Willard.

It’s been a busy year and a while since I shared a guest blog post and I’m so excited to share this one because I admire Carrie for many reasons.

I hope you enjoy it.

“My seventh child was a preemie. Unlike my first seven pregnancies and births, which were uneventful and natural, this one was traumatic right from the start. We experienced multiple threatened miscarriages, bleeding and finally a rupture of membranes (PPROM) at 21 weeks. There were weeks of bed rest and hospitalizations, culminating in an emergent C-section and 11 week NICU stay for my little one.

My son is now 2 and thriving. I’m finally healing from the anxiety and fear I felt during that time, and feeling like my old self. Only, I’m different. My preemie taught me a few things.

One – It’s ok to do nothing.

I’ve always been a productive person who struggled to sit still. Visiting my tiny baby in NICU was an exercise in patience and stillness. It took nurses up to 45 minutes, sometimes longer if they were busy, to untangle my son’s leads and place him down the front of my shirt for kangaroo care. Then I dare not move lest his alarms begin blaring. Sitting and holding my son and bonding with him, giving him the gift of my presence and savoring his, was the most important thing I did all day, though it looked like nothing.

Two – Boundaries are good.

I gained a new appreciation for boundaries as I watched the NICU nurses carefully strap my sweet-potato sized newborn into a “snuggly” in his isolette, keeping him still and giving him a feeling of stability and safety. As his tiny legs kicked against the boundaries and found a wall of resistance, he began to learn what was him, and what was not him. The locked doors of the NICU, visitor rules and the hand-washing rituals also provided boundaries for well-being of its inhabitants.

Three – Patience – a virtue learned through adversity.

The mom of a preemie is told no over and over again. No, you can’t get out of bed. No, you can’t see your baby yet. No, you can’t hold your baby yet. No, you can’t put the baby to your breast. Those final days and weeks as your preemie looks like a “normal” full-term newborn are torturous. Your longing to have your baby home is palpable, but it’s not safe for your child to leave the hospital yet. Just when I thought I could wait no longer, I got a fresh length of patience handed to me, like a few more feet of rope.

Four – it’s ok to need help.

Early on in our NICU journey, recovering from a C-section, dizzy, exhausted and in pain, I would arrive into the NICU and collapse into the nearest nurse’s arms in a cascade of tears. It’s unlike me to show emotion in public, so this was not normal behavior for me. Struggling to bear up doesn’t mean you’re not strong. It means you need help. And that’s ok. Without the help of my husband, my older children, my friends, family and worship community, I wouldn’t have survived the experience as well as I did.

Five – Let go of unrealistic expectations and just do your best.

One of the most difficult things I had to accept about my son’s birth was the fact that he needed supplemental formula to gain weight. As a die-hard lactivist and former breastfeeding counselor, I knew what I was doing when it came to breastfeeding. My body may have betrayed my son by not keeping him in my womb for 40 weeks, but by golly I was going to nurse my baby! After a difficult period in which I experienced hot anger, shame and grief, I accepted a new normal. When I decided it was ok to give my son formula because he needed it, I felt peace. I used a Lact-Aid supplement to protect my milk supply and so my son would not develop a preference for bottles. (And I’m happy to report that he is still nursing at 2, and is long weaned from supplemental formula, something that makes me very proud!)

And finally, I come to the sixth point: Mothering is not all about me.

I didn’t want to give birth prematurely. I didn’t want to have to leave my son day after day in the NICU. I didn’t want the nightmares, the anxiety, the post-traumatic stress, the intense shame, the anger, the interruption of bonding with my newborn, the formula, the grieving of normal. But I don’t get to choose. Mothering is about holding a child’s hand as they walk down their path. It’s not about me.”

Carrie Willard is a homeschooling mom of 7 curious kiddos. She encourages moms to make time for their passions, goals and dreams during the busy child-rearing years at http://www.CarrieWillard.com/maketimeforyou

Check her out online!

Thanks for reading.

Having a baby in the Neonatal Intensive Care Unit (NICU) is emotionally challenging on a regular day, but add the holidays into the equation and it might be too much to handle!

My daughter spent 121 days in the NICU following her micro preemie birth at 23 weeks gestation. Since then I have made it my mission to help other parents who are struggling through their journey with prematurity.

Many parents wonder how they can possibly get through the holiday season with their baby in the NICU and not at home with them.

Below are 8 ways to help you celebrate the winter holidays with your NICU baby:

1. Hand write your Christmas cards and use them as Thank You cards

Whether your baby is spending most hours in an isolette or crib, you will have plenty of time to write. This is a great opportunity for you to thank people for their kindness. Some might have dropped off food, done your dishes, babysat, or just left you a supportive message.

2. Decorate your baby’s isolette or crib

Hang some ornaments or a wreath (not real pine!) over the isolette/crib. You could also decorate with some garland and tape up a few holiday cards. Why not take a picture of your home Christmas tree or Menorah and tape that to the wall also?

3. Skype

You could arrange Skype sessions with your family so that they can see your baby on Christmas or Hanukkah. You may need permission from the NICU nurses to do it, but it might be fun to have your family sing Christmas carols to your baby or just wish your baby a Merry Christmas or Happy Hanukkah.

4. Read your favorite holiday classic story to your baby

Babies love to be read to and studies show that it helps their brains develop and relaxes them so that they grow faster. Who wouldn’t want their Mommy or Daddy to read them a holiday book? This will also help you feel more in the holiday spirit.

5. Decorate preemie sized onesies for your baby to wear

If you have children at home, go buy a few preemie sized onesies and a few fabric markers at Toys R Us and decorate the shirts. It’s a great way for siblings to give a gift to their new baby brother/sister and they will also feel included. If your baby can’t wear cloths yet, make them anyway so that your new outfit can be the first one they put on!

6. Open gifts

Bring a few of your baby’s gifts to the NICU on Christmas Eve/Morning or on each day of Hanukkah and open them! There is no reason why you can’t do that to keep with your holiday tradition.

7. Bring some cookies/dreidels/latkes for the NICU staff

Whether you just met the NICU staff or have known them for months- they are your baby’s parents when you can’t be there and they will be there for you too. Wouldn’t it be nice to share the giving season with them and bring them some cookies or something else that shows them how thankful you are for them? Plus, you will get to celebrate with them and participate in one of your holiday traditions.

8. Celebrate New Year’s at noon

Bring some party hats and noisemakers to the hospital but don’t blow them! Put them next to your baby in the isolette/crib and take some pictures. These photos will be cherished for years to come. Plus, they represent a new year full of possibilities and promise and that’s what all NICU parents need. Then do your own New Year’s Countdown at NOON!

This originally appeared on my Huffington Post Parents page: 

http://www.huffingtonpost.com/entry/8-ways-to-celebrate-the-holidays-in-the-nicu_us_5850b2f5e4b0320ed05a9993

(Joy’s 1st Christmas)

(Joy at 4 years old)

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 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.

(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.

(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.

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 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!

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.

(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 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.

(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.

(Stephanie Vaughan)

(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.

(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.

(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.

(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 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.

(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.

(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.

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.

(Mary Midolo from 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.

(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 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!

(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!

(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?

(my table)

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