A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
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:
Happy New Year!
I wish you all a year full of health and happiness.
November through December were super busy and I decided to take a break from writing to recuperate from the craziness and spend some quality time with my family.
November was National Prematurity Awareness Month and November 17th was World Prematurity Day. During November I am focused on spreading awareness on premature births and all things related to it. It was a busy month!
Then December was just as crazy, but because of wonderful family celebrations. Both my parents and my son have December birthdays; there were three school plays, and Christmas of course! We also took a family trip to the North Pole, NY and it was magical. It even snowed there!
Today’s post is intended to share some of the activities, appearances, and interviews I did during National Prematurity Awareness Month so that you can share them with any preemie parents or NICU (neonatal intensive care unit) staff in hopes that they can help others.
Most of the news segments and the radio interviews I did focused on how to prevent your baby from contracting RSV (respiratory syncytial virus) during the winter months, as this virus is very dangerous for all newborns, but particularly premature babies.
November 17th was a full day of interviews. I arrived in Atlanta Georgia the night before and was up at 4:30 am to begin the day. I even had to have my makeup done for the media tour! The last time I had my makeup done was my wedding day!
I did 25 interviews on November 17th! They included a combination of radio and television interviews.
All of these interviews were shared either live on the news, inserted into news segments about RSV and World Prematurity Day or live on the radio. It was such a long day, but so worth it. I have gotten a lot of feedback and messages from people who saw or listened to the interviews and they seemed to have helped many parents.
Dr. Paul Checchia of Texas Children’s Hospital was sitting next to me and was able to share his medical knowledge with the hosts.
Although there were some awkward moments, most of our interviews went very well and I hope I’m asked to participate again next year.
Below are the links to three of the television news interviews I did. Most of the TV interviews were similar.
To listen to some of the radio interviews I did that day, please see the link to my website HERE and scroll down to the RADIO section. Some of these were more lively and entertaining than others!
I also want to mention that The Morgan Leary Vaughan Fund (which I am on the Board of Directors) hosted a fundraiser in honor of World Prematurity Day and it raised over $1000, which will be donated to research the prevention of and treatments for NEC (Necrotizing enterocolitis) in premature babies. That was a great afternoon!
The Morgan Leary Vaughan Fund received a grant from the Petit Family Foundation to record a series of podcasts dedicated to spread awareness of NEC research and treatments. To date, TEN episodes have been recorded and you can listen to them all HERE.
And last: A few days before Christmas my principal allowed me to take 5 student representatives and two teachers to Maria Fareri Children’s Hospital to drop off some donations.
The students at Mahopac High School donated over 120 toys for hospitalized children and over $200 to the NICU scrapbooking program! We piled onto a mini bus and headed off to Maria Fareri Children’s Hospital. Upon arriving, we were greeted by hospital staff dressed as Santa’s Helpers and were then allowed to tour the NICU with Chief Neonatologist Dr. Edmund LaGamma. The tour allowed the students to see how the NICU works (without visiting bedside, of course!) and even speak to some nurses and parents about what it’s like to have a baby in the NICU. I really believe the students were touched and they all commented that they want to become involved with the hospital.
So, let me wish you all a happy and healthy 2016! My one request is that you think of an organization you can donate your time or money to, or just a good deed or kind gesture that you can do to help bring someone JOY!
Today is World Prematurity Day!
November 17th is a day where the world pauses for a moment to think about the reality of premature births, how to prevent them and how to best help the preemies who enter our world far too early.
This year marks the 5th annual World Prematurity Day. In 2014, more than 200 countries participated in activities, and more than 60 countries planned special events. An estimated 1.6 billion people around the globe were reached.
World Prematurity Day was started by EFCNI (European Foundation for Care of Newborn Infants) and it has been growing like crazy! Today hundreds of organizations that support research into prematurity and families of premature babies are taking part in events all over the world to help spread awareness.
Locally, I was involved in a few events related to World Prematurity Day. On November 13th I delivered 20 isolette (incubator) sized quilts to Maria Fareri Children’s Hospital and was able to walk around and give them out to preemie parents. Joy spent 4 months in their NICU following her premature birth and they saved her life!
This is was a very special day for me because I love talking to the parents who are sitting beside their preemie’s isolette wondering how they got there and what will happen next. It is that moment that these parents need another person who has walked in their shoes- to listen to them and to be their friend. I wish I could do this every day. I also wish something similar was available when Joy was in the NICU.
The quilts were made by my talented mother-in-law and the Northern Star Quilters Guild of Somers, NY.
On Sunday the 15th, I attended the 2nd Annual Event to Remembeer, put on by The Morgan Leary Vaughan Fund. It was a great day! They are a nonprofit dedicated to raise money in which they donate to research into preventing NEC (Necrotizing enterocolitis) and finding ways to treat it. I am a member of their Board of Directors and I am so proud to say that! Below are some photos of the event.
The Morgan Leary Vaughan Fund has been producing podcasts that are designed to educate the public on NEC and other prematurity issues. You can listen to them online by visiting: http://www.morgansfund.org/category/podcast/
I also want to share my latest guest blog posts, in which I wrote in honor of World Prematurity Day 🙂
The entire month of November is National Prematurity Awareness Month, and this includes World Prematurity Day.
Many national and international landmarks are going to decorate their buildings in purple. Please light up your house purple tonight if you can, and if that’s not possible, search the web for some great pictures of how purple is spreading prematurity awareness.
And, please visit the donation page on my website so you can help the fight against prematurity.
November is Prematurity Awareness Month and I wanted to take the opportunity to discuss the impact breast milk can have on the lives of preemies.
Human milk is important for the optimal growth and development of full-term babies, but it’s even more important for babies born prematurely. Mothers who pump breast milk for their preemies provide their babies with milk especially formulated for preemie development. This is why I decided to do all I could to nurse my micro preemie after her birth.
My daughter Joy was born at 23 weeks gestation in 2012 and weighed just 1 pound and 4 ounces. At first we were not sure if she would survive. The neonatologists and nurses sat me down to explain how important it was for me to pump breast milk for her. They told me about how the digestive organs of a premature baby often cannot handle formula and that by giving my daughter breast milk, I may be able to increase her immune response and also allow her tiny intestines and stomach the time they needed to get stronger. That was all I needed to hear.
After trying and failing to nurse my three previous full term sons, I decided I had to do everything possible to provide my premature daughter with breast milk. It was not easy. Sometimes I would pump for 45 minutes and only get about 3ounces, but due to her small weight, that was enough to sustain her for a while. At one point she was only receiving 3 ml of breast milk an hour!
It was a huge commitment to pump for my daughter. She spent 4 months in the NICU and I would have to pump every 2 to 3 hours to keep up my own milk supply. This meant that I had to frequently leave my daughter’s bedside for 30 minutes at a time to go and pump. I felt guilty not spending all of my time with her while I was at the hospital. This also meant that I could not spend a lot of time with my other three children because I had to interrupt our time together and pump every 2 to 3 hours as well. I felt guilty no matter what I did, until I understood that the breast milk I was providing for my premature daughter most likely was saving her life.
The milk produced by the mother of a premature baby is higher in protein than the milk produced by the mother of a full term infant. Human milk also contains lipase, an enzyme that allows the baby to digest fat more efficiently.
Studies have shown that breastfed preemies are less likely to develop infections that are common to babies who are fed formula. If your baby is preterm, her organs are not as developed as they should be. Her intestines and stomach are even smaller and less mature than the tiny, immature gut of a full-term baby.This puts preemies at risk for a number of diseases within the first weeks of life.
One of these diseases is necrotizing enterocolitis (NEC). NEC is the most common and serious intestinal disease among preemies born before 32 weeks gestation. A baby is at a higher risk of developing NEC between 2 and 4 weeks after birth.
NEC develops when tissue in the small or large intestine is injured or begins to die off. This causes the intestine to become inflamed or, in rare cases, develop a hole (perforation).
Once NEC has developed, the intestine can no longer hold waste, so bacteria can pass through the intestine and enter the baby’s bloodstream or abdominal cavity. This causes a serious infection and babies with NEC can get very sick. Most babies with NEC will be put on antibiotics and require surgery to remove the infected part of their intestines. These babies may end up with feeding difficulties as they grow, due to shortened intestines. NEC can also cause fatalities when surgery cannot repair the damage or if the infection is not caught in its early stages. Roughly 30 % of premature babies will not survive NEC.
There is not a vaccine or one particular thing a parent can do to prevent their preemie from getting NEC. However, preemies that are fed breast milk may be at a lower risk of developing it. Studies conducted by researchers at Children’s Hospital Los Angeles demonstrate that a protein called neuregulin-4 (NRG4) — present in breast milk, but absent from formula — may be protective against the intestinal destruction caused in NEC.
Prolacta Bioscience created the world’s first and only human milk caloric fortifier made from pasteurized human milk cream. Neonatologists will typically fortify human breast milk so that breast fed preemies can gain the necessary weight to help them develop quicker. Fortifiers add extra fats and protein to the breast milk to allow for this. Prolacta Bioscience was able to make this breast milk fortifier with real human breast milk, which can only add to the natural immunity and protection that breast milk offers premature babies. This is a comfort to mothers who want to exclusively breast feed their babies but also understand that premature babies need the fortifier to help them grow better and faster.
The Morgan Leary Vaughan Fund is an all-volunteer, public charity dedicated to promoting public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advancing research to prevent, diagnose, treat, and ultimately, cure NEC. As a member of their advisory board, I am proud of the work they have done so far and I look forward to what they will do in the future.
The Morgan Leary Vaughan Fund just had their inaugural event and it was fabulous! Many people came out to support the fight against NEC. The event was held at Two Roads Brewery in Stratford, CT. There was music, raffles, great food and great beer! Every person in the room has the same goal- to raise money for research that will prevent future premature babies from getting NEC. And we all agree that the first step is giving our babies a human milk diet.
If a mother can produce enough breast milk to allow her premature baby to grow, she may be giving her baby a greater gift than just growth; she may be giving her a better chance at life!
Click HERE for more information on The Morgan Leary Vaughan Fund
Click HERE for more information on Prolacta Bioscience
The miracle preemies below are the reason why The Morgan Leary Vaughan Fund exists today and the reason I am now an advocate for preemies and prevention!
November is Prematurity Awareness Month! Please watch our cable TV special called “Premature Babies Today” with host Jim McGuire, Dr. Edmund La Gamma from Maria Fareri Children’s Hospital at Westchester Medical Center, Debra Randazzo from Hailey’s Hope Foundation, and preemie mom Julie Bruno.
World Prematurity Day is November 17th!
Let me introduce you to our guest panel:
Jennifer Degl: Mother of a 23 week micro preemie and Author of From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
Dr. Edmund La Gamma: Chief of Newborn Medicine at Maria Fareri Children’s Hospital, in Valhalla, NY
Debra Randazzo; Mother of 2 premature babies and both Treasurer and Board Member of Hailey’s Hope Foundation
Julie Ann Burton: Mother of premature twins
Please watch, like and share to show your support for preemies and their families!
I would love to hear about your experiences with premature birth through the comments below.
Happy World Prematurity Day to all of you preemie parents and grandparents out there. You deserve to celebrate!