The tragic loss of her first grandchild catapulted Connie to action. She founded a nonprofit with the goal to educate expectant moms about the signs of fetal distress and to ensure all babies are born “alive and kicking.”
Tell us a little about your background…
I was born in 1952 in Randolph, Massachusetts, the second of five children to Al and June Houde. My dad worked for American Can Company and we moved around a lot growing up. My family was my world, my first introduction to love. I was also surrounded by the love of girlfriends, boyfriends, and friends of the family. Laughter, smiles, and joyful times filled each day.
Then, one sunny Friday morning, a drunk driver fell asleep and his car hit my youngest brother Robert on the sidewalk on his way home from the hardware store. Robert was riding his bike, as he always did, with our brother Albert. In a split second, we were robbed of my twelve-year-old brother. I questioned God. What happened to my family? Why did my brother have to go? I thought children weren’t supposed to die. I thought dying was reserved for old people. Instantly my whole life of fourteen years was forever changed by this first introduction to loss.
I don’t think my father ever got over the loss. My mother was amazing. Of course she was filled with grief, but she gathered up the pieces and made our lives as children wonderful. Back then you didn’t have any grief counseling. We each dealt individually with our grief.
It was a rough time personally. It wasn’t until the end of high school that my life returned to some semblance of normalcy. Right after my graduation, in 1970, my dad was transferred to Liverpool, England. I attended Southport Technical College and studied three “A” Levels (Law, Economics, and English) before entering the United Liverpool Hospitals College of Nursing at 18 years old. After three years of study, I became a State Registered Nurse (SRN), equivalent to a Registered Nurse (RN) in the US.
I met my husband Mark in 1972. He was a medical student at the University of Liverpool School of Medicine and I worked at the Royal Southern Hospital in the same area—one of the toughest sections of Liverpool. When my parents dropped me off at the hospital to begin my work on the wards, my dad said, “Well, Connie my dear, the only way is up.” The Southern was a great hospital with the most wonderful people and such a great energy and atmosphere; I loved training there.
Mark and I were engaged a year after we met and married the following June, 1974. Newlywed couples were now our friends, with babies on their way. New moms, dads, nurses, and doctors, and soon, our baby girl, Sarah, entered our world. I embraced another level of love.
In 1976, we moved to the US. Mark was accepted into the residency program at Highland Hospital in Rochester, NY, near my parents, and began his residency in Internal Medicine. I began working nights at a nursing home as it was difficult to get a job in a hospital with an English nurse’s training and while awaiting to take my NY State boards. After our first son—Bob, named after my late brother Robert—was born in 1977, I did get a job at the same hospital as Mark, which was fantastic. I “floated” all over the hospital, working wherever I was needed.
After Mark’s residency, we moved to Elmira, NY. Mark began working in the Emergency Room—which he still does to this day. I took classes towards a college degree and worked part time now and then. We now had four children so my life was very busy. I was also involved in church and school activities.
In 1986, when I was 33 and our kids ranged in age from 3 to 11, we decided to move closer to my brother, just outside Atlanta, where we still live today. Mark and I both worked at urgent care centers, and I continued to take college courses when I could.
Although I absolutely loved nursing, I also enjoyed many other fascinating fields, like photography, journalism, art, and history. I became interested in Energy Medicine and became a Certified Pranic Healer—a form of modern energy healing using color prana (life-giving force). My nursing degree began to take a back seat.
Our kids grew up so fast. Soon enough, they were on their own, falling in love, getting married. Their extended families were joining ours. Another level of love began.
When I lost my brother in 1967 to a drunk driver, it was the worst thing that had ever happened to me. Then, in 2005, I lost both my parents within five weeks of each other. Now THAT was the worst thing that had ever happened to me. Still, nothing prepared me for the loss of my granddaughter.
I awaited my first grandchild. I would be “Grammy” just like my grandmother was to me. My heart swelled. The anticipation was palpable. Showers and gifts abounded, including pink quilts, booties, and dresses. First steps, first books, first kittens, first puppies, first dollies—there were so many firsts for me to look forward to.
On June 28th, 2009, my granddaughter was born in deafening silence. It wasn’t supposed to be this way. An ultrasound revealed no heartbeat.
We were told it could be genetic, it could be an infection, it could be the cord, it could be a lot of things. The medical establishment begged us to accept that it was a rare event, like “being struck by lightning.” Would acceptance create another level of love for me?
Stillbirth. I thought that only happened during delivery when there was a problem. A strange mechanical phrase was thrown my way: torsion of the umbilical cord. How could it be that the cord that was supposed to nourish my granddaughter and give her life snatched her from our arms before we ever met her? The doctors confessed that there was absolutely no way they could have known about the cord accident and nothing that they could have done.
We welcomed our precious Roberta Rae with all of the love our hearts could hold as well as all of the sorrow. We embraced another level of love. This one the most difficult, yet tender.
What is your next act?
In 2012, at the age of 59, we launched Project Alive & Kicking, A foundation devoted to the expected baby (PAK). Our mission is “To empower expectant mothers by educating them about healthy pregnancies, the possible signs of fetal distress, and the action they can take to help their babies come into the world thriving, alive and kicking.”
We want all pregnant moms to become familiar with what a forty-week gestational journey entails, including Mom & Baby Tracking Charts, Checklists and, in near the future, a Tracking App. We want them to request ultrasounds, question what is not understood, voice their concerns, watch for movements and count kicks. It’s the new gestational norm. Together, we have created a new level of the most undeniable love.
Our foundation is now doing the job it was born to do, and fulfilling many little legacies for the silent yet articulate tiny voices we heard and love. Yes, we have reached another level of love, and yes, it’s the best one yet.
How did this foundation come about?
Immediately following the loss of my granddaughter in 2009, my sister-in-law introduced me to a website, the Pregnancy Institute, run by Dr. Jason Collins, MD, MSCR, an obstetrician and researcher who has devoted over twenty-five years of his life to studying umbilical cord accidents. I spent hours on his site, read all the literature and studies, and watched compelling videos of parents who had lost babies to umbilical cord accidents.
Dr. Collins was monitoring babies in utero from 28 weeks onwards to make sure that moms who have had a stillbirth would never have to endure another loss. He followed umbilical cords on ultrasound machines and looked for changes on monitoring strips that alerted him to fetal distress. Was this possible? Umbilical cords can be seen and followed in utero? Why don’t moms and health care professionals know?
From that point on, Dr. Collins became a household name in my world. It only took the delivery of one precious stillborn baby in his practice for him to dedicate his life to the study of umbilical cord accidents. He even went back to get a Masters of Science in Clinical Research in order to ensure his work would pass the most rigorous scientific standards and be accepted by the mainstream medical establishment. Dr. Collins has published a book on his findings, Silent Risk: Issues about the Human Umbilical Cord, 2nd Edition.
Dr. Collins’s passion for the stillborn resonated with me. We met in New Orleans just a few months after my granddaughter’s birth to discuss his vision of keeping our babies safe in utero. He recommended that an expectant mom should begin a journal of her baby’s movements at 20 weeks. At around 28 weeks, he wanted both the umbilical cord checked and tracked on ultrasound for any abnormality, and for moms to begin kick counting. Dr. Collins also advocates an additional ultrasound at 36 weeks. His mantra, “You gotta get to the moms” set my course.
Terms like Umbilical Cord Accident (UCA), torsion, twists, long, short, and nuchal cords became my everyday lingo. During my own research, I learned about Group B Strep, CMV (Cytomegalovirus), Toxoplasmosis, and many other preventable conditions that were stealing our babies under the guise of stillbirth. I also discovered that there were more researchers than I could ever imagine championing our babies.
Compassionate moms, dads, aunties, uncles, brothers, sisters, friends, and acquaintances began working together in Charleston to empower pregnant moms. We were now family, and we were adamant that no mom should ever have to endure our pain. Research was key and a foundation was quietly forming.
Fast forward to today. Our team, including brilliant researchers, new moms, dads, babies, siblings, rainbow babies, my rainbow grand-baby, and more grand-babies are now my world. Everyone is impassioned and resilient. Our hearts are set on fire by our convictions. We are sewn together by the delicate steely thread of loss. We are devoted to each other and together we have entered a captivating level of bittersweet love.
Why did you choose this next act?
You know, my next act chose me. I have always been a matter-of-fact type of person. It was absolutely mind blowing that neither my husband nor myself—both well educated and well versed in the medical profession—had no idea that stillbirth was claiming over 26,000 babies in the USA every year.
Moms are not aware that their chance of having a stillborn is 1 in 160; they think, “Well, stillbirth will never happen to me.” Let me tell you, if those were the odds of winning the lottery, everyone would be buying tickets with every cent they have!
When you think about it, at one time people had a heart attack and died. That was it. No one knew the warning signs and there was no intervention. Now, if you have chest pain and go to the emergency room, the measures taken are incredible. This is what we’re trying to do with stillbirth: intervene through prevention.
How did you figure out how to educate moms-to-be?
I knew that all future parents, as well as medical personnel, should learn about the possibility of a stillbirth. With 26,000+ stillbirths a year in the USA, and 3 million globally, it is imperative that women learn the facts. Once knowledgeable, they could be proactive for their baby’s health.
Since doctors are busy and don’t always have the time to educate expectant moms about stillbirth prevention, I knew I had to raise these moms’ awareness and vigilance during their 40-week gestational journey. So I thought, let’s begin in the beginning, before pregnancy; let moms know how to prepare for their journey. So we begin at Week 0 and take it from there. We seek to educate moms in order to grow their attention and confidence—not to scare or intimidate them.
Our educational program is called “Operation Due Date”; each week explains to the mom what her baby is doing and how her baby is growing. We provide new information every week—for example, how to change your diet, what you need to mention at the first doctor visit, or how to prevent infections such as Listeria or Cytomegalovirus (CMV).
Communicating everything in an informative, educational, and non-threatening way is our goal. We want moms to work with their health care teams and not be a back-seat driver. If you have a question, voice it. If you don’t understand something, get an explanation. I want them to know that their health care teams are there to educate and inform them—that’s their job!
How hard was it to take the plunge?
Not difficult at all. My granddaughter should be here; that is what drove me to begin. I watched an inspirational video online about an artist who had broken his neck and was a quadriplegic on a ventilator. A very compassionate man—basically a genius—came up with an idea and turned it into a way this artist could paint via computer.
The gentleman who devised this was very humble. He said, “If not me, then who? If not now, then when?” This saying fuels me. I often think of all the thousands of stillbirths and that if someone had picked up this gauntlet, then maybe we would have known. Maybe Roberta Rae would be here.
How did you prepare?
Basically I lived online. I researched and researched, read lots of medical articles in journals, and spoke with lots of loss moms. I had no idea what social media really was, but I knew I had to jump in with both feet ASAP. I also signed up for Google alerts for the keywords stillbirth, stillborn, and umbilical cord.
It is pretty amazing to see how my social media name, BabieBeat, is recognized now. I just connected with a young mom a couple of days ago, who was referred to me by Dr. Collins. I told her who I was and she said, “Oh my God, I know you! I read and reread all of your posts online. I feel like I already know you.”
Yelda Basar Moers—now our PAK board vice president—had the same reaction when we met in Baltimore at a conference one evening for dinner. She said, “You are the one online who writes really long explanations. I wanted to meet you and I never thought I would be able to find you.”
Most moms like what I write. I hope they find peace and knowledge from my words. There are a few who are not fans—I think I have only come across three so far. I think two were moms—not loss moms—who did not like the information I posted about umbilical cord accidents when I was asked by a mom for the facts. Another was a mom who was not in a good place emotionally. Stillbirth is a long journey. It never ends; it just changes and becomes more livable. Slowly joy begins to creep back into all our lives.
I took classes on grant writing at Emory and at Kennesaw State University. My teacher at Emory recommended the book Managing the Nonprofit Organization by Peter F. Drucker. The biggest thing I learned was when you begin a nonprofit—one from the heart, especially—some people cannot get past the “me, me, me” part of the nonprofit. Once you begin, the nonprofit is no longer about you and your feelings. You have just invited the world to walk with you and you are so much bigger now. It stops being about just “me.” You have to trust people and trust their expertise. Everyone is important and everyone matters.
How supportive were your family and friends?
Well, my own immediate family was very supportive along with some friends. My daughters have been involved every step of the way. Danielle, my daughter-in-law, has had a very difficult time dealing with the loss of her daughter. My son Bob supports Danielle and her feelings, so they are not involved in PAK. I have run a couple of things by my son for his advice but I don’t really talk to Danielle too much about PAK as I know it is a very difficult subject for her.
Both Bob and Danielle are very excited about PAK being chosen by the Huffington Post for The Next Ten Initiative. Maybe in time they will become involved. If not, it’s ok. I do this for them as much as for my granddaughter. I know Danielle would—if she could.
I know some people thought I should not do anything, as Bob and Danielle were not going to be involved. But I felt, “What’s right is right” as my sister’s mother-in-law, Mary Castranova, used to say.
There was just no way that I could stand by when we are losing 26,000 babies a year and about 16% of those losses are to umbilical cord accidents—and not let moms know this is a very real possibility that could impact their pregnancy. I just couldn’t live with myself if I didn’t try to make a difference for all the little babies out there who may not arrive Alive & Kicking because no one told their mom about decreased fetal movements or kick counting or infections.
What challenges did you encounter?
First, securing our 501(c)(3) status was a lot of work and took much longer than anticipated. We applied early on and were told it would only take 4-6 weeks but, with all of the IRS hoopla with the Tea Party, everything was delayed and slow. We were granted our nonprofit status last summer, and now we are official!
Until we were a real nonprofit, it was difficult to move forward as one because, legally, we were not. We will be doing our media launch to magazines, newspapers, etc. this fall. We are also very active on social media. My daughter Sarah is in charge of Facebook, Twitter, and Instagram and brings a great vibrant edge to our promotion. Danielle Boyd, my son’s fiancée, has taken over our Pinterest account and we now have 28 boards!
Second, recruiting volunteers can be a challenge. We are all volunteers at the moment—friends and family and those affected by stillbirth. Dealing with stillbirth is such a devastating situation that many moms are not ready to join us and promote healthy pregnancies. But I find that it does help a lot of moms to move forward when they can deal with their grief in a positive and proactive way. I never say, “move on” as that sounds as if we are leaving the past behind. Trust me, we do not do that. We are the voices for our babies, but we have made a positive out of a very difficult and gut-wrenching situation. The desire to join us depends on where you are in your journey and how you want to approach it. The walk is so different for everyone.
Perhaps my sweet stillbirth mom, Kristina, said it best on Facebook, “You don’t get over it, you just get through it. You don’t get by it, because you can’t get around it. It doesn’t get better, it just gets different. Everyday…Grief puts on a new face.”
The third challenge is getting through to obstetricians, who do not want to alarm pregnant moms about the possibility of stillbirth. I’d say the majority of OBs do not encourage kick counting. At PAK, we are all working on that aspect of the 40-week gestational journey. We are now sending out our media packets and my husband will be approaching his hospital. We will see how it goes. We know we’re putting a heavier load on the health care teams when moms are calling with concerns about kicks, but moms need to keep track of their baby’s movements and alert their caregivers when they have concerns. ACOG (American College of Obstetricians and Gynecologists) has no protocol for decreased fetal movements; Great Britain does. There are studies going on now to validate kick counting.
In the words of Dr. Jason Collins — “You gotta get to the moms.”
What/who keeps you going?
First is my granddaughter. I am her voice.
Second are the women I work with and the stories we hear because a mom knew about decreased fetal movements and went to Labor and Delivery to be checked and now has a baby in her arms—Alive & Kicking!
Third is the realization that our information has the possibility of being read worldwide, of having a huge impact. How many moms now know how to cut down on the possibility of viral or bacterial infections during pregnancy? How many moms will call their doctor and say, “I just feel like something isn’t right and I want an ultrasound so I can see my baby?” because she is now aware, has a proactive attitude, and is vigilant. Pregnancy is a pretty amazing 40-week trip—and mom has to be in the driver’s seat from day one!
Fourth is our donor generosity. We have had a busy year so far and have surpassed our fundraising goal at the Cooper River Bridge Run, our main fundraiser, this past spring in Charleston, S.C. We raised close to $40k. We also hope to raise funds by writing grants and working with companies who want to help support healthy pregnancies. We have regular donors, as well as people who know someone who has suffered a loss and give a one-time donation.
Fifth, The Huffington Post has chosen PAK for its The Next Ten campaign as a charity that will take us into the future! HuffPost selected ten causes they believe will define the next decade. One of them is: “Reducing Maternal and Infant Mortality by Investing in Health Infrastructure,” and PAK was chosen for this cause.
Seventh is Dr. Collins. The man is a genius and has devoted his life to the plight of the stillborn.
Lastly, new technology. There are now many different and exciting ways to get our information to moms. We are in the process of developing a new app for iPhone and Android; it’s going to be amazing!
Did Bob and Danielle have another healthy baby after Roberta Rae? How are they doing?
Yes, Jacks arrived on June 14th, 2010, just 2 weeks shy of Roberta Rae’s first birthday. It was probably the longest nine months of all our lives!
I think for the most part they have a full, happy life. Danielle said a while back that she feels like she suffers from Post Traumatic Stress from losing her daughter. She has flashbacks—it is difficult as everything floods back to her when she thinks about her daughter.
Bob recently told me of a friend whose pregnancy journeys have been extremely difficult. He feels that you have to focus on the positive and the present and not let the negative and past consume you. There is so much to be grateful for.
What did you learn about yourself through this process?
I took an IQ test years ago and I scored really high, higher than my husband, who is an ER doctor. He was not amused! I never considered myself “that” intelligent, but when I look at what I have written for the website, I think to myself, how did I ever do that? I just keep on going and I know we can keep improving our information. I know that I am not a quitter. I know that when I need to do something for PAK, make a phone call for PAK, or explain stillbirth for PAK, this superhuman super-organized superwoman appears and takes over my body.
What advice do you have for women seeking reinvention in midlife?
I would say just do what you love. I love working with people and helping people. I love to pray every morning. I love to ask and listen for answers. If you are doing what you are supposed to be doing, the right amazing people will walk right into your life. Sometimes you may have to put your feelers out there, but 99% of the time, they just appear.
What advice do you have for women in midlife who might want to start a nonprofit focused on a cause they are passionate about?
I would say go for it, but ally yourself with others who are also passionate about your cause. You can begin the legwork on your own, then hopefully others will join in.
Limit yourself and your direction to begin with. You do not want to be drifting all over the place and become sidetracked and vague. You need your information to be concise and powerful. Your cause needs to be clear to attract people; they need to know what you are trying to do. You don’t want to have so much on your website that the person who visits is not sure about what your goals are.
When you begin to research your cause, make sure it doesn’t bore you or disinterest you. There are going be all kinds of angles to investigate and become familiar with. Stay focused and begin small. You can expand your horizons once you are focused and have a team.
Once your get going, so many ideas and information will come your way. Some things just need to be put into the 5- or 10-year plan. There are only so many workers in the beginning, so don’t spread yourself or your co-workers too thin. Stay focused and stay driven. Know your goals—although they may change a bit in time. Growth is a beautiful thing.
What’s next for you? Do you think you have another next act in your future?
Let me see. I see big possibilities and new horizons for PAK to reach, climb and shine. I never thought I was very creative or inventive, but I am with PAK! Maybe I will work on something with my photographs. Maybe I will do something with sewing as I have so many wool garments I need to do something with from my Liverpool days. I literally just don’t have the time to do anything else at the moment.
How can people get involved or donate to PAK?
The Cooper River Bridge Run is our huge fundraiser. We would love for people to join us and run with us. A mass of hot pink (our color for 2016) PAK T-shirts running together over the bridge would be fantastic! PAK is thrilled to be hosting a post bridge run party at Harborside East, one of Charleston’s most stunning waterfront venues. Harborside East, has generously donated this event space for our evening party and is excited to be a part of this amazing fundraiser. We hope to have hundreds in attendance. The catering is phenomenal and our caterer, Mark Welker at SaltWorks Catering Company, donates his time and is extremely generous with the pricing for us. We would love for people and companies to buy tables at our event and fill the room.
Some people may want to host a run, a bake sale, a golf tournament, or even a garage sale for us to help with fundraising. Some may want to help get our media packets out. Some may like to write for our website. We are open to suggestions and welcome everyone with open arms!
If anyone wishes to donate, they can donate on our website. They may even send a check to our P.O. Box if they so wish. All of the information is on our donate page. All donations are tax deductible; PAK is a 501(c)(3) nonprofit foundation!
Contact Connie Hosker at email@example.com
Twitter: https://twitter.com/PAK4MomAndBaby @PAK4MomAndBaby
Instagram: https://instagram.com/projectaliveandkicking/ @projectaliveandkicking