A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
Join me on Friday June 23rd from 4 to 7 pm at Mahopac Golf and Beach Club for some fundraising in the Sun at Morgan’s FunDay!
We are having a BEACH PARTY!
Morgan’s FunDay is sponsored by The Morgan Leary Vaughan Fund and our proceeds go to the doctors and scientists who are researching ways to better treat and prevent Necrotizing Enterocolitis in premature babies.
Necrotizing Enterocolits (NEC) is a devastating disease that can take the lives of up to 50% of the premature babies who develop it. That is unacceptable to us at Morgan’ Fund and we are trying to do everything we can to stop it.
You all know that my daughter Joy was born 17 weeks early in 2012 and we know that she is alive today because of the wonderful care she received a Maria Fareri Children’s Hospital and research like this.
The Morgan Leary Vaughan Fund is named after Morgan- who lost a large portion of his intestines due to developing NEC soon, after his premature birth. Morgan is thriving today because of this research.
So… what are we doing at the beach?
We’ll have lifeguard supervised swimming in beautiful Lake Mahopac, a dinner buffet, desserts, an adult bar, ice cream bar and several fun activities.
Our activities (besides swimming!) include a DJ, games, crafts, face painting, a clown show, balloon animals, and we’ll have raffles galore!!!
Check out some of our raffle items:
Over 30 restaurants from both Putnam and Westchester have donated gift certificates so that we can raffle them off along with many gift baskets.
We also have some amazing auction items- such as 4 Total Experience Bronx Zoo Tickets & 4 Beardsley Zoo tickets, 4 ARMY Football Tickets, a Foursome to Mahopac Golf and Beach Club and more.
And your ticket automatically enters you into the Door Prize raffle for a brand new golf bag- donated by the Pro Shop at Mahopac Golf and Beach Club, and it comes with a 1 Hour Golf Lesson with the Club Pro- Billy Ashford! Plus, each adult gets one FREE DRINK ticket to use at the bar and each child gets a coupon for a FREE MEAL at Chili’s!
I’m honored to present Dr. Boriana Parvez of Maria Fareri Children’s Hospital with this year’s Lily Pedro Award for Excellence for her work in helping to establish the New York Milk Bank. The award is named after Lily Pedro- the sweet little girl who lost her life to NEC.
So pack your bathing suit and grab your sunscreen and get your tickets today by clicking HERE.
You can click HERE to check out some photos of last year’s event:
We’ll see you on June 23rd! Oh, and spread the word! The more people who come- the more money we can raise for research!
Thank you 🙂
Happy Mother’s Day to all of the Moms, Step-Moms, Grandmothers, Godmothers, Foster-Moms, Aunts and every woman who has “mothered” a child.
Here are some of my favorite quotes about mothers:
“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.” ~Rajneesh
“No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star.” ~Edwin Hubbell Chapin
“A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie.” ~Tenneva Jordan
“The heart of a mother is a deep abyss at the bottom of which you will always find forgiveness.” ~Honoré de Balzac
Mothers should be recognized every day for what they do for their children except we don’t want or need the recognition. It’s part of the job we signed up for and we love it. However it’s nice to have the people you love the most in the world share some words of gratitude with you- their mother.
My first child’s first birthday was on my first Mother’s Day! Say that twice fast. Lol! And my last child’s first birthday was on Mother’s Day also. Weird.
My best Mother’s Day memory yet (and I’ve been a Mother for 12 years now!) is Mother’s Day 2012. That is the day that I got to meet my daughter for the first time.
As most of you know, my daughter Joy was born at 23 weeks gestation, weighing only 1 pound and 4 ounces. She was just 11 ¾ inches long.
Not only did I almost lose my life several times during my short pregnancy and again during the surgery to deliver her, but her extremely early birth put her at risk for severe medical issues, including losing her life as well.
Because of the seriousness of both of our conditions after her birth, I was not able to meet her or touch her for a few days. I refused to name her until I could meet her- although the doctors kept telling me that I might never get to meet her.
Well, it was late in the evening on Mother’s Day and I was able to convince a nurse to wheel me down (IVs and blood included) to the Neonatal Intensive Care Unit (NICU) to meet my daughter.
I was only able to stay for 5 minutes because of my condition, but I got to meet her. She opened her eyes (which were meant to be shut for 4 more months) and stared in my direction. They tell me that she could not possibly see me because her eyes were not able to focus yet, but I know she did see me or sense me.
Then I sanitized my hand and was able to stick my pointer finger in the opening in the isolette (incubator). What happened next will stay with me forever. She clasped her tiny little fingers around my finger.
I felt Joy for the first time in months.
That night I called my husband and told him that I wanted to name her Joy.
Anyway… as I write this post today, on Mother’s Day 2017, we are also celebrating my oldest son’s 12th Birthday, which falls on Mother’s Day again.
I would not have it any other way!
Happy Mother’s Day.
Before I go, I would like to mention that Mother’s Day is not as happy for many people as it is for me. We should be sensitive to women who may be struggling today- like those who recently lost a mother, lost a child, or someone who has been unsuccessfully trying to have a child for some time. Let’s all try to be sensitive to those women. Click HERE to see how you can help them.
My micro preemie turns 5 years old today!
Life is certainly different now than it was before Joy was born.
Many people don’t believe that everything happens for a reason- but I do. I recognize that many bad things happen to many good people and that can hurt, but I’d like to believe that those bad things will lead to opportunities for great things, although it may not feel that way at the time.
“I trust that everything happens for a reason, even if we are not wise enough to see it.” — Oprah Winfrey
“Miracles happen every day, change your perception of what a miracle is and you’ll see them all around you.” — Jon Bon Jovi
I also believe that I was granted a miracle. It was not just a miracle that my daughter survived, but it was also a miracle that I am alive as well. So the question became “What will I do with this miracle and how can I become worthy of it?”
Five years ago after delivering Joy at 23 weeks gestation and almost losing my life on four different occasions, I had no plans to become an author or an advocate for premature babies, but the universe kept telling me otherwise. I had little time for much, but I could not suppress the feeling that I had to use our story for something greater. I felt I needed to share both our pains and successes with the world so that other families could benefit from learning about what we went through. This is what led me to become a writer, blogger, speaker, and advocate for premature babies and their families.
My sweet little “Baby Joy”, as most family members call her, is not a baby anymore. Although the road to her 5th Birthday has been quite bumpy, we are so happy we decided to take the journey.
Joy has been just that to everyone in her life. She is funny- laughing at all of her own jokes. She loves to sing, dance, and dress up like a princess each day, but she also loves to play any game involving swords and any other toys her brothers like to play with.
Look at her now! Joy was born at 1 pound and 4 ounces and was just 11 3/4 inches long. She spent 121 days in the NICU- most of which were painful and uncertain. Today she suffers from some lung issues (Bronchial Pulmonary Dysplasia) but is otherwise perfectly healthy and loves life.
Joy has taught us all to be more patient and tolerant than we may have been otherwise. She has taught us all to love unconditionally and live our lives to the fullest.
Joy has taught me a few more lessons- some of which I never would have learned without her:
These are lessons that I hope to instill in my children as they grow.
As I’m sitting here tonight writing this blog, I cannot help to imagine how different life would be today if I was not granted the miracle of Joy.
But I was.
Happy 5th Birthday to my Preemie Princess!
Sunday May 7th was the Go the Distance Walk and Family Fun Day to raise money for Maria Fareri Children’s Hospital. Although it was a bit chilly, we were so happy that it didn’t rain like it did last year!
Maria Fareri Children’s Hospital is a member of the larger Westchester Medical Center. They are a pediatric hospital committed to providing the most advanced care available to more than 20,000 critically ill infants and children each year. It’s the embodied vision of hundreds of parents, medical professionals and community leaders who had a fervent desire to create a “family-centered” children’s hospital where parents are not visitors but partners, and where the unique creative surroundings are an integral part of the healing process. They have that down pat!
What makes Maria Fareri Children’s Hospital so unique?
That’s why we walk and that’s where the donations go!
Team From Hope to Joy had a Superstar Tent and a pretty good turnout. Unfortunately the walk fell on the same day as family Communion, so we had a few less people than normal, but that didn’t stop us!
The walkers were treated to bagels, donuts, granola bars, water, juice and coffee both before and after the walk.
There was a huge bubble truck cranking out bubbles for the kids to run through and pop; two bounce houses, and a tent with games with prizes!
Also, there were a few princesses and Star Wars characters walking around for photo ops.
Many members of Westchester’s Iowa Style Wrestling club showed up to walk with our team and support the hospital. Thanks guys!
Team From Hope to Joy raised over $4500 for the hospital and we hope to continue to support them at the walk each and every year. Visit our team page by clicking HERE.
We were the #5 on the Top Teams list. Check it out HERE:
It just so happens that May 7th was also Parents of Preemies Day- a day started by Graham’s Foundation to show support for the parents who love and nurture the premature babies of the world. You can read more about Parents of Preemie’s Day by clicking HERE.
Click HERE to read about and see some pictures of last year’s walk.
You can still donate for another week or so by clicking on our Team Page.
Thanks for your support and we hope to see you at the 2018 Go the Distance Walk and Family Fun Day.
I recently had the honor and pleasure of participating in the 3rd Annual FDA-INC Neonatal Scientific Workshop in Bethesda, Maryland.
My role, as co-chair of the Communications Workgroup, was to plan and execute a 90 minute Breakout Session entitled “Communication Strategies to Promote a Research Culture”.
Christina Bucci-Rechtweg (a pediatrician by trade who now works for Novartis Pharmaceuticals) was the other co-chair and I could not have asked for a better partner. Christina and I have known each other for a little over a year and I have had the pleasure of speaking with her on Capitol Hill on two different occasions (both addressing the Senate and the House of Representatives) on behalf of S.2041 and H.R. 5182. Christina is brilliant and hard-working and was instrumental in planning our Breakout Session activities.
But before I get into what our session was about and what we accomplished, I’m betting that you would like to know what INC and C-Path are and what the goal of the 3rd Annual FDA-INC Neonatal Scientific Workshop actually was.
C-Path (Critical Path Institute) was founded in 2005 in Tucson, Arizona, and is an independent, non-profit organization dedicated to bringing scientists from the FDA, industry and academia all together to collaborate and improve the drug development and regulatory process for medical products.
INC (International Neonatal Consortium) launched on May 19, 2015, and is C-Path’s ninth consortium – a global collaboration formed to forge a predictable regulatory path for evaluating the safety and effectiveness of therapies for neonates.
“By uniting stakeholders from research institutions, drug developers, regulatory agencies, patient advocacy and other organizations,” said Janet Woodcock, Director of the U.S. Food and Drug Administration’s Center for Drug Evaluation and Research (FDA/CDER), “INC can develop practical tools that can be incorporated into clinical trials for neonates, which will then lead to more successful, efficient trials and provide this population with better treatments.”
INC’s Statement of Purpose:
INC will accelerate the development of safe and effective therapies for neonates. The consortium will engage the global neonatal community – families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders – to focus on the needs of the neonate. Through teams that share data, knowledge, and expertise, INC will advance medical innovation and regulatory science for this underserved population.
I’m honored to be a part of INC!
At this workshop, co-sponsored by the FDA and Critical Path Institute, participants reviewed the progress of INC, discussed the challenges in conducting registration trials to prevent preterm birth, and the breakout groups tackled specific regulatory science issues for developing safe and effective therapies for neonates. Regulators from around the world engaged in working sessions with academic experts, interested companies, neonatal nursing organizations, NIH institutes, family groups and nonprofit organizations.
Day 1 began with several meetings of the working groups, including Severity for Neonatal Adverse Events, Retinopathy of Prematurity, and the Seizures Workgroup, and it ended with a workgroup dinner reception at the Bethesda North Marriott Hotel.
Day 2 began with Dr. Jonathan Davis (Tufts University, INC Co-Director) making the opening remarks. I also know Dr. Davis for over a year as he was the spearhead behind the Senate and House bills I mentioned above, and I had the pleasure of speaking on Capitol Hill with him. Dr. Davis has dedicated his entire career to bettering the outcomes of premature babies. Next, Susan McCune (Director of Office of Pediatric Therapeutics, FDA) gave a presentation titled “A New Era for Developing Neonatal Therapeutics”. After she was done speaking, each workgroup had a few minutes to share updates about what they have done and looked to accomplish in their Breakout Sessions. Soon after the workgroup summaries were complete, a presentation titled “Developing Endpoints for Use in Regulated Neonatal Trials” was given by Gerry Baer (FDA) and Ralph Bax (European Medicines Agency).
After a short coffee break, there was a panel session titled “Plenary Session on Challenges in Conducting Registration Trials to Prevent Preterm Birth”. Several people participated in this session, including Mark Turner (University of Liverpool, INC Co-Director), Olof Rugarn (Ferring Pharmaceuticals), Yosuke Komatsu (GlaxoSmithKline), Louise Kenny (University College- Cork Ireland), Errol Norwitz (Tufts Medical Center), Mehali Patel (Bliss), Deb Discenza (Preemie World and member of Preemie Parent Alliance), Ralph Bax (European Medicines Agency), and Barbara Wesley (FDA). Nicole Thiele from EFCNI (European Foundation for the Care of Newborn Infants) also called in and gave a presentation via WebEx.
Following the Plenary Session, we all took a break to eat lunch and get ready for the Breakout Sessions.
There were several concurrent Breakout Sessions, including the one that I was a part of, so I can only summarize what went on in the other sessions, after giving details about mine.
Christina Bucci-Rechtweg and I led the Breakout Session called “Communication Strategies to Promote a Research Culture”. We had a few goals. We wanted to build strategies that embed neonatal research that is family-centered in the NICU culture. In order to do this, we looked to first identify communication challenges in neonatal units that impede successful implementation of research.
We planned a mapping activity where we asked the participants to answer four questions regarding how parents are approached to enroll their babies in clinical trials and what makes them more likely to consent. This activity gave us a great deal of information on the current practices surrounding clinical trials in the NICU. Both Christina and I shared an informal literature review of some of the articles previously published on clinical trials in the NICU, from both the medical and the parent perspective. We also shared results from a survey we had previously given to parents of premature babies who are members of the Preemie Parent Alliance. This was also very telling and we are in the process of analyzing the entire survey, along with the parent comments and we will use that information to harness multi-stakeholder collaboration to address communication challenges and improve the quality and efficiency in neonatal research. Our session ended with a phone presentation given by Nicole Theile of EFCNI on a white paper they put out on the topics we were discussing.
Although Christina and I led the Breakout Session, we had a lot of input from the other members of our workgroup as well. I only recently joined INC and this workgroup so I am especially thankful to the other workgroup members for all of their work. They include Wakako Eklund (National Association of Neonatal Nurses), Lynn Hudson (C-Path), Carole Kenner (Council of International Neonatal Nurses), Jeff Ming (Sanofi Pharmaceuticals), Lily Mulugeta (FDA), Min Soo Park (Yonsei University), Ronald Portman (Novartis Pharmaceuticals), Randy Prescilla (Boston’s Children Hospital), Thomas Salaets (University of Leuven), Catherine Sherwin (University of Utah), Ine Skottheim Rusten (Norwegian Medicines Agency & PDCO), Adina Tocoian (Shire), Mark Turner (University of Liverpool), John Van Den Anker (Children’s National Health System), Sander Vinks (Cincinnati Children’s Hospital Medical Center), Kelly Wade (Children’s Hospital of Philadelphia), Siri Wang (Norwegian Medicines Agency and PDCO), and Anne Zajicek (National Institute of Child Health and Human Development/National Institutes of Health).
Two other Breakout Sessions were running concurrently to ours and those were titled “Multiple Enrollment in Clinical Trials” (Co-Chaired by Dr. Jonathan Davis of Tufts Medical Center/INC Co-Director and Gerri Baer from the FDA) and “Long-term Outcomes” (Co-Chaired by Neil Marlow from the University College London and Mark Turner from the University of Liverpool/INC Co-Director). Although I could not attend either of those sessions, I heard their summaries at the end of the day and it seems as if both sessions were very successful.
The conference continued on with more concurrent Breakout Sessions after a short coffee break. I attended the session titled “Regulatory Challenges in Conducting Trials to Prevent Preterm Birth” (Chaired by Mark Turner). The other two Breakout Sessions were “Developing a Neonatal Common Protocol Template” (Co-Chaired by Ron Portman from Novartis Pharmaceuticals/INC Co-Director and Anne Cropp of Echelon Pharma Solutions) and “Applying Generic Severity Grading Criteria to Persistent Pulmonary Insufficiency of Prematurity” (Co-Chaired by Karel Allegaert and Thomas Salaets from the University of Leuven).
Towards the end of the day we all assembled again as leaders from each Breakout Session reported back to the group with how their Breakout Session went, what was accomplished and what their next steps would be.
There were two more presentations given before Mark Turner’s closing remarks and our dinner reception.
First was “The Role of INC in Pediatric Trial Networks” by Edward Connor (PTC, I-ACT for Children) and William Tremm (Janssen Research & Development) and second was “Nonclinical Models of Neonatal Therapies” by Susan McCune (FDA). Both gave us a lot to think about as we me move towards our next steps on our INC committees.
Although I have spoken at several NICU events and nonprofit fundraisers in the realm of premature births, this was my first time participating in a conference where I felt that real change was being enacted towards preventing premature births as well as improving the treatments and medications used on our world’s current and future premature babies. As a member of The Morgan Leary Vaughan Fund’s Board of Directors, I can speak for the whole organization in saying that we are excited at the thought of new clinical trials being done to produce new medications to treat and cure Necrotizing Enterocolitis.
I can only hope that my present inexperience as a member of the International Neonatal Consortium (INC) will lead to vast experience in this space, as I continue to serve on INC’s Communications Workgroup. I look forward to what we will accomplish.
One of our first goals following this workshop is to create and publish INC’s quarterly newsletter.
Be on the lookout for it.
I want to mention two members of the Preemie Parent Alliance (PPA for short) that attended the event. Deb Discenza runs Preemie World, which she started after her daughter’s premature birth 13 years ago. Deb also spoke at the workshop. Dr. Yamile Jackson attended the workshop as well. She runs Nurtured by Design, a company she started after designing The Zaky and Kangaroo Zak. They are developmental products used on premature babies in the NICU and I highly recommend them both. She started her company after her son’s premature birth 15 years ago.
I would like to personally thank Christina Bucci-Rechtweg for her leadership and patience as I acclimated to the INC Communication Workgroup.
Alicia West, Laura Butte and Lynn Hudson of C-Path deserve a lot of thanks (and rest!) for all of their hard work in putting the workshop together.
I would also like to thank Wakako Eklund (NANN) for taking such wonderful photos at the event and allowing us to share them. She is a very talented Neonatal Nurse Practitioner and photographer!
And last, I would like to thank Dr. Jonathan Davis (Tufts University/INC Co-Director) who suggested that I get involved in INC and allowed me to make such meaningful connections. The future premature babies of the world will be much better off because of the dedication of Dr. Davis and his passion for neonatology.
Please visit INC’s website to see how you can help us with our goals. After all, advancements in neonatology cannot happen without research.
Oh, and I even got to see a Cherry Blossom. It was not down by the Potomac, but at least I got to see one!
As always, thank you for reading and for your support 🙂
Please comment on anything you found interesting or would like to know more about.