A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
The 2nd Annual Morgan’s FunDay to fight Necrotizing Enterocolitis in premature babies was on Friday June 23rd and it was a huge success!
We were supposed to have the party on the beach but Mother Nature had different plans for us and we moved the party inside. Our guests didn’t seem to mind at all and were all happy to be in the air-conditioned ballroom and not outside in 97% Relative Humidity!
We had such a great day!
Over 50 adults and close to 40 kids came to help support our cause.
Necrotizing Enterocolitis (NEC) is an infection that inflames part of a baby’s intestines. This disease, which can often require surgery to remove damaged sections of intestine, often develops two to three weeks after birth, but can occur later. “Necrotizing” means damage and/or death of cells, “entero” refers to the intestine, and “colitis” means inflammation of the colon (lower part of the intestine). This occurs predominantly in premature infants. The mortality rate of babies who require surgery to treat NEC can be up to 50%.
The Morgan Leary Vaughan Fund is a nonprofit dedicated to raising awareness about Necrotizing Enterocolitis and the money raised goes towards research into treating NEC and preventing future premature babies from losing their lives to this terrible disease. I am a proud member of their Board of Directors. Click HERE to read how Morgan’s Fund was founded and learn of the amazing NEC survival story of Morgan Vaughan and how that inspired his family to start a nonprofit.
I got joined The Morgan Leary Vaughan Fund a few years ago because I know that my daughter is alive today due to the type of research they support. My daughter Joy was born at 23 weeks gestation in 2012 and weighed just 1 lb. 4 oz. (575 grams) and was only 11 3/4 inches long. She spend 121 days in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital at Westchester Medical Center and is now a happy and healthy 5 year old.
The Mahopac Golf and Beach Club and their excellent staff helped us plan a great event and this allowed our fundraiser to go off without a hitch despite the fact that we had to move inside because of rain.
The highlight of the afternoon was the award presentation. I was honored to present The Lily Pedro Award for Excellence to Dr. Boriana Parvez of Maria Fareri Children’s Hospital at Westchester Medical Center. Dr. Parvez has been practicing neonatology for close to 30 years and she has recently been instrumental in helping establish The New York Milk Bank. She has even been to Albany urging New York State to pass legislation requiring them to pay for donor breast milk for extremely premature babies whose mothers cannot produce enough- and the legislation passed!
Established in 2016, the Lily Pedro Award for Excellence award recognizes individuals or organizations who exemplify the mission, vision, and ideals of The Morgan Leary Vaughan Fund. It is named in memory of Lily Marie Pedro, infant daughter of Katherine and Frank Pedro, who lost her battle with NEC in 2012.
Quite a few NICU staff members from Maria Fareri Children’s Hospital attended our event to support our cause and to congratulate Dr. Parvez. Members of The New York Milk Bank also came to do the same. It was wonderful to have them all there!
(Members of The New York Milk Bank)
I am truly humbled at the number of people who donated their time and services to make our event so special!
When our guests arrived they entered a room adorned with purple and white balloons donated by Billy Perillo of Brian Williams Event Decorators in Jefferson Valley, NY. Each flower centerpiece was hand made and donated by Louise Ladden. Ryan Michael from Turning Point Entertainment donated his time and equipment to provide entertainment and act as our Master of Ceremonies for the afternoon. Zippy the Clown put on a fabulous show for the kids on the patio while the adults ate and listened to a few speeches and he kept them occupied with balloon animals so that we could have our awards presentation. Jennifer Lynn Photography donated her time and expertise to take professional photos for us throughout the event. Aimee Freundich volunteered to be our face painter and she did an excellent job creating all sorts of artwork on the faces, arms and legs of the kids. And I have to thank the 11 students from Mahopac High School who volunteered their time to help me check in our guests and sell raffle tickets. My students and their kind hearts always blow me away.
Putnam and Westchester Counties have some very generous business owners. We had over thirty donated gift certificates to local restaurants and other establishments that we were able to raffle off along with our four silent auction items!
Because of their generosity and willingness to help us save the lives of premature babies- I would like to list names of the businesses that donated with the hopes that you consider visiting them or using them for your future needs.
So- if you’re looking to take your family out to eat in Putnam or Westchester Counties- please consider visiting The Melting Pot, Arturo’s Tavern, Mike and Joes Wood Fired Pizza, Kobu, Cacciatori Pizzeria, Uncle Louie G’s, Café Piccolo, Ramiro’s 954, il Laghetto, The Chophouse Grille, La Familia Felice, Frankie & Auggie’z, La Valetta Pizza and Pasta, Benevento’s, Rick’s Seafood, Char Steakhouse and Bar, or Three Boys from Italy.
I would like to give a shout out to Fraser’s Hardware, The Pied Piper Theater, The Yorktown Stage, The Paramount Theater, The Carmel Cinema, Regal Theaters, Legoland of Westchester, Lake Compounce, ARMY Football at WestPoint, Six Flags New England, The Bronx Zoo, The Beardsley Zoo, The Mystic Aquarium, Dorney Park, A Touch of Beauty, Cozy Nails and Red Mills Market for their donations as well. I also want to thank Terrance Hughes and Billy Ashford from The Pro Shop at The Mahopac Golf and Beach Club for donating a new Titleist golf bag and a 1 hour gold lesson. All of these donations helped us raise the necessary money so that we can support research into Necrotizing Enterocolitis.
The 2nd Annual Morgan’s FunDay was not only a fun afternoon for all who attended, but it raised almost double the amount that we raised last year!
Thank you to everyone who attended, donated money, donated a raffle or auction item, or shared our vent with someone else.
I am blessed to have my premature baby to hug and kiss each night and I’m honored to be a part of The Morgan Leary Vaughan Fund.
All of the money we raised at the event will go to the doctors and scientists who research better ways to treat and ultimately prevent NEC in premature babies.
Please check back to www.micropreemie.net and www.facebook.com/jenniferdegl to see what we are up to next and what we are doing to advocate for and spread awareness about premature babies and their families.
Have a great summer!
The Degl and Vaughan Families
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.
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.
Thank you for your support!