Guest article by Sherokee Ilse
If each day in October were used to raise awareness; inspire advocacy and support, and promote prevention research would we make progress? And what if it went far beyond October and became the goal for each and every day of the year?
Will significantly fewer babies die? Will more parents make the best decisions when meeting and parenting their child who died too soon – minimizing regrets and maximizing memories? And will the community at large and on the local level become incredibly supportive of those who have a miscarriage, stillbirth, neonatal death, or SIDS death?
Will every parent feel less alone and comforted to know they have the right to love, miss, grieve and continue to ‘parent’ their baby throughout their own lifetime?
That was our dream when we led the charge toward the 1988 Presidential Proclamation declaring October as Pregnancy and Infant Loss Awareness Month. It was a time of shifting the paradigm from what I call the Dark Ages to a kinder, gentler, more understanding Age of Enlightenment in the Baby Loss Community.
Few support groups existed but were growing and medical providers were only beginning to open up about offering parents to see, hold, and make memories of these little ones – something not done in the previous decades. It was rare to find helpful literature, videos, and story sharing.
No one spoke of it on television or in movies. The way was slow and hard. Many helped – many organizations and individuals! Too many to name for fear of leaving someone out.
Whether working together as we did to secure that Proclamation, organizing Walks to Remember, national conferences or working individually in our own families, faith communities, workplaces, and communities, we have all been a part of the change.
And today it continues. Visit www.October15th.com and see the list of activities all over the world. Read Still Standing, the Huffington Post, and so many other papers, blogs, social media sites, etc. See baby’s pictures, YouTube videos, Instagram, and the many mementos and memories shared in creative ways throughout the web and our communities. And hear the stories of when things went well in hospitals and clinics and in families.
There has been growth to celebrate! Just not enough. There is still heartache and loneliness among parents. Very little emphasis and little money spent on prevention research. A number of programs in hospitals are going backward after losing the Perinatal Loss Coordinator or the money to fund these important programs or the will to go the extra mile for our baby loss families.
Too many families who experience miscarriage still receive barbaric care (or at least not as excellent as they deserve). And those who experience a Rainbow Pregnancy/baby after loss (or have infertility or additional losses) are not getting the understanding and excellent care they deserve.
What will we do about it?
Keep working and creating and sharing. My motto – never give up, never give in! Let’s adopt it and not accept just mediocre. Let’s fill the gaps and keep improving for our families and their careproviderss, no matter the obstacles.
In that regard, let me share with you a couple of stories and unveil the new program my team and I are creating at Babies Remembered – Loss Doulas International. Where will you share your stories and progress?
Ten years ago this August 1, I was late returning my niece Anna to her mom (my sister Shannon). We had spent the day together and the fun was hard to close down in exchange for the 30 minute car ride to downtown Minneapolis where Shannon was finishing work. She was understanding about the tardy auntie and we visited for a few minutes on the street before Anna hoped in mom’s car and off they went on the 45 minute drive to their home in Stillwater…across the 35 W bridge.
Thinking nothing of it, I moved on to my evening meeting where I learned that a bridge had collapsed. Shock! What bridge? The 35 W bridge. When? Oh, no!!!!. What if….. I could hardly stand it. I tried and tried calling. Nothing. What if? What if my being late caused them to be on that bridge at the very wrong time? What if the rush hour collapse included them?
After a few hours of pure panic, I learned they were safe. We did our calculations realizing they missed that terrible moment in time by about 8-10 minutes.
They (we) were very fortunate, but 13 who died and 145 who were injured were not so fortunate! One hundred eleven cars suddenly dropped 115 feet to the river and its bank. The trauma and loss still impacts the entire community and far beyond I am sure.
And how does this relate to our baby loss community you might ask?
Much has come out about the Post Traumatic Stress this disaster caused in many. In the families of those who died, in those who were injured and even those we were not injured. I could hardly drive across a bridge for a long while…such fear and flashbacks I had. And I wasn’t even there! My niece was traumatized for a long time as was her entire family, including my sister. And there are many more. Imagine the families and individuals whose lives were dramatically changed forever when that 40 year old bridge fell down.
When something so ordinary as driving across a bridge brings trauma because the trust has been lost and people have died or were hurt, well, life looks quite different and it becomes personal.
And the same is true for parents who enter a pregnancy with bliss and trust. Everything will and should go fine, they believe. It does for everyone else, why not me? Hope springs eternal. Stories are shared with happy endings constantly. Yet, when the ordinary becomes a trauma zone and there is a death, the naïve joyful, hopeful self is dashed into the rocks, like those cars and people. And Post Traumatic Stress naturally follows. Recent statistics say it PTSD impacts up to 70% of parents after the death of their baby, including miscarriage.
Living through such horrific loss is its own miracle. Then whether ready or not, many try or become pregnant again. There they go, crossing that bridge. Hold your breath. Worry and fear rise. Where is the hope? Don’t think about the unthinkable. But how is that possible? Bridges collapse. Babies die. Who knew?
During a rainbow pregnancy, expectant parents may not be able to do much but survive and yet at what price? What relationship dynamics are being creating with the unborn child? One of extreme protecting? One of distance – afraid that the will be hurt too much if we love too deeply. If we believe they are coming, reveal to others we are pregnant, get the room ready, and talk to them while in the womb, what if they die? Or can we give our love intentionally to the degree we can, doing our best to help start our beloved baby on a hopeful positive path?
Pregnancy after a loss, infertility and more losses, can all be very stressful time that also can bring PTSD back to the surface. Even if we thought we dealt with it.
Who can help? Who understands what it is like to go back to that same waiting room with other happy pregnant moms and babies? To that hospital? To that baby room where another devastation can surely happen again. Oh, the fears, the vulnerability, the worry, the sense of failure and lack of confidence! And for nine months, not just a few weeks.
I remember asking one of our mom’s at our Pregnancy Loss Center how she coped with having so many losses (7 I believe). I will never forget her sage advice which became my mantra during my rainbow pregnancies. She said something like this, “When I am pregnant, I take nothing for granted. If I only get three weeks with this baby or three months, or nine months or 20 years, I want to have no regrets. I want that baby to know I loved her/him fully, to the max. I give all the love and attention to this baby. And if something happens and my baby does die, I will have done it well with no regrets.”
I loved it. What sense it made! Being afraid to love and to bond was not helping the baby or me. I was already in love and the idea of having hope and being present as a mommy to this dear innocent little one became my choice. I tried. I did my best. It didn’t work every day, but I re-decorated the room, bought presents, sang and prayed to, and for, my child and kept sharing all that I wanted to do with him when he was born alive and as he grew. I pictured racing in fields together, reading book after book cuddled on our bed together, and sitting together around the Christmas tree opening presents with him (and future siblings) for the rest of our lives. I needed to have that concrete set of dreams to rely upon, to build my hope on.
I have no regrets and thank Debbie constantly for sharing ‘her way.’ Not the only way, but in my mind a wonderful way to embrace each pregnancy, each baby.
Then if the baby is born alive, the pressure from others and the hope that ‘Now you will be happy. Now you are a parent,’ complicates the natural feelings of renewed loss and sadness. Yes, this living child is a dream come true. The answer to our prayers! A life! What a miracle and what joy we feel in our hearts! But it often doesn’t end there. When you realize what is missed and who did not get these cuddles and naps in grandpa’s homemade cradle, it hurts. Unfulfilled plans for a future with that baby are dashed, unexpected emotions can overtake you.
Does having a rainbow baby mean the storm has suddenly disappeared. Not to be thought of again? These children do not replace their older siblings, nor should they. Each has their place in our hearts and in our families. Yes, our life is amazing and our children and their children are healthy, loving and bring us much joy! And our children who died also hold a place that cannot be filled. My husband David wrote a poem in the first weeks of our living son, Kellan’s birth. It shares some of that reality in a stunning, succinct way.
My Two Sons
My first son.
My agony and loss.
A tidal wave.
Loving Family and friends.
New Life! Anxious wait…
New heights every day.
By smiles, laughs and coos
In order to help more parents be intentional in their quest, pregnancy, and birth of a rainbow baby, I have written an intentional, in depth Rainbow Baby curriculum and created a new program…the first international certification and training program on Rainbow pregnancies.
Those who become certified are called Rainbow Baby Loss Advisors®/Rainbow Baby Loss Doulas®. Others who want to learn more for themselves –parents/grandparents and birth professionals such as nurses, medical providers, childbirth educators, doulas, etc. — are invited to simply take the class if they wish.
I feel honored to have received inspiration, information and support from many amazing folks, Joann O’Leary, Lindsay Gibson, Robin Schroeder, Nicole Dobson-Sands, Maribeth Doerr, Franchesca Cox, Lindsey Henke, and tons of others out there who taught and inspired me as I lived through pregnancies after loss (including some infertility) and as I have trained people through the decades, and in developing this curriculum.
A few of our many goals are to help people-
• Know their rights, options and multiple ways to experience a rainbow pregnancy
• Present ways to reframe/refocus attitudes and behaviors that help to embrace joy
• Feel better understood and supported with infertility and multiple losses
• Learn how Five Principles of Perinatal Loss Patient-Centered Care™ can enhance care of families with loss and rainbow baby pregnancy experiences
And we hope to talk in depth about bonding and fears of bonding with short and long term consequences; fears and love – how they impact our responses, beliefs and actions; the costs of trying to have another baby – emotional, financial, vulnerability and so much more.
We love Franchesca’s book, Celebrating Pregnancy Again, which inspires expectant parents to celebrate the special time with growing baby that can’t be redone. There is only one chance to do one’s best. No (or few regrets)!
These babies can hear after only a few months in the womb. Do they pick up on our fears, our distance, our love and our embracing? Will they live a different life dependent on how we intentionally parent them during the pregnancy and afterwards. There is good research on some of this (thanks Joanne O’Leary, Jane Warland and colleagues). Many questions, many options! I call them choices. Yes, even in the depth of fear and anxiety, we can do good work to make the best choice we can for that time. Then we live with it, or tweak it, making the most of it as we go forward, being as intentional and loving as we can.
It is my hope that this training and certification program will help grow more understanding doulas, nurses, childbirth educators, doctors, midwives, and bereavement/loss doulas who can enhance the care they give to parents in rainbow pregnancies even after they are born. I also hope that more parents and families will learn and do their best for this child, themselves, and their whole family. These parents who join our classes will also be teachers to those who have not walked this path, but seek deeper understanding.
Our first ONLINE web class (6 hour class) is scheduled for Tues/Wed Oct. 17-18th, 2017 (3 hours each night) in order to do my part during this Awareness Month.
If you wish to know more about our training and certification program and wish to join us now or at an upcoming web class, (we offer a discount until Nov. 1, 2017: contact me directly (firstname.lastname@example.org) or visit our website at www.BabyLossFamilyAdvisors.org
Yes, it is deeply upsetting to cross that bridge. Bridges do fall down and babies do die. But if we survive the event, we can be there for each other offering support and understanding to those who contemplate a subsequent pregnancy or who find themselves pregnant after loss. Will the fears and the pain rule your lives and your pregnancies and who your babies become? Or will you take control of the fears and enter into a hope-filled agreement with yourself to be present and embrace as much of the the joy as possible, knowing it is a precious time you have with your baby in your womb?
In answer…I believe ‘hope springs eternal.’