My daughter Lydia Joanne was born with a full head of dark hair like her dad’s, long fingers like mine, and a constricted umbilical cord that caused her death in my womb. She was loved so fiercely and anticipated so eagerly in the 8 months I carried her. Her big brother Benjamin blew raspberries on my belly, her Dad dutifully put together her crib, and I dreamed of our lives together with the daughter I always wanted. I couldn’t wait to meet her – the little girl who would change my life forever.
The moment I was told “I’m sorry, there’s no heartbeat” was the worst in my life.
The moment after I kissed my daughter for the final time, when I was wheeled out of the hospital with empty arms and a broken heart was a close second.
Leaving that hospital without my perfect baby girl, going home to a quiet house with the baby swing set up in the living room and the nursery’s closet full of colorful clothes, I thought Lydie’s story was over.
My husband and I soon figured out that the healthiest way for us to grieve was to talk about Lydie. To miss her out loud. Which sometimes meant making other people uncomfortable.
I blogged. I published entries every day, sometimes multiple times a day. I processed what had happened to me, to Lydie, to our family.
We set up a miniature Christmas tree just for Lydie. The first ornament I hung was the “Baby’s First Christmas” one my mom had purchased. Lydie was supposed to be our Christmas baby, due just a week before. When I shared about her tree on my blog, ornaments started arriving in our mailbox. From family, friends, and even strangers. Handpicked for Lydia with love.
We started a ritual of lighting a candle every evening at dinner. Gathering around the table, taking a moment to focus on our daughter and sister and saying the words “I love you, Lydie” and sometimes “We miss you, Lydie” out loud.
We dedicated a tree for Lydie by our family cottage, with the words “always in our hearts” on the sign above her name. At home, we planted Lydie’s Garden, with forget-me-nots, bleeding hearts, tulips, hyacinths, and a rock inscribed with her name and another with the words that were read at our wedding and her memorial, “Love never fails.” Friends and family bought lilac bushes, windmills, glass flowers, garden plaques. Lydie’s Garden came to life, blooming colorfully.
We learned to see Lydie in the stars and in the pink of the evening sky.
We fundraised to donate a Cuddle Cot, a cooling unit to allow babies to stay with their families longer and create more memories together. I wrote a letter, encouraging parents to sing to their babies, read to their babies, bathe their babies. That’s my husband’s biggest regret – that he didn’t bathe Lydie. On Lydie’s first birthday, we returned to the hospital where she was born to dedicate that Cuddle Cot. The staff surprised us with a bit of a party for our girl. It was a celebration of love – and missing of course, but most of all, of love. I regularly hear from families who have used that Cuddle Cot, telling me about the difference Lydie made for them. How that Cuddle Cot, inscribed with my daughter’s name, allowed them to have the time with their children that we weren’t able to with Lydie.
And after a terrifying and anxiety-ridden third pregnancy and ultimately, the safe arrival of Lydie’s little sister, I started getting involved in advocacy work. 26,000 babies a year are stillborn in the United States. That’s 1 out of 160 pregnancies. That’s far too many. Many, like my pregnancy, are low-risk pregnancies with no warning signs. Stillbirth has been called the most understudied medical issue of our time. More research is desperately needed.
My first undertaking was planning a race called Lydie’s Loop: Steps against Stillbirth. I poured my heart and soul into the planning, and I did a happy dance every time a registration email loaded in my inbox.
On the day of the event, in October 2016, I was surrounded by almost 300 participants, most donning their yellow t-shirts with my daughter’s name and footprints. And wearing their own children’s names too, forming a star on the back underneath the words “I will always remember.” Kids got their face painted and stood in line for balloon animals, families stuck their tickets in paper bags, hoping to win a raffle prize, teams of people took photos. A few moms pushed their Molly Bears, the same weight as their babies, in strollers. One mom proudly carried a photo of her son as she completed the one-mile walk. There were smiles and there were tears, but ultimately, there was community. The third annual Lydie’s Loop will be held on September 22nd, 2018.
High on the success of Lydie’s Loop, my husband and I founded the Ohio Chapter of the Star Legacy Foundation in January 2017. We wanted to leverage and build upon the accomplishments of the national Star Legacy Foundation, based out of Minnesota, with the belief is that many stillbirths are preventable, and through increased awareness, education, and partnerships, we can empower families and healthcare professionals to prevent perinatal and neonatal death. We also believe that when stillbirth is not prevented, families deserve optimal care from medical professionals and communities. Approximately 900 stillbirths occur in Ohio each year, a rate that has remained unchanged for the last 15 years, ranking Ohio 7th in the nation in the number of stillbirths annually.
Last May, we hosted a Perinatal Bereavement Conference in Columbus, with almost 100 healthcare professionals in attendance. This July, we’re hosting a conference at the Cleveland Clinic. I know families like ours are receiving better care in the hospital because of our work.
Currently, we are working to pass legislation in the state of Ohio to grant a one-time tax credit to parents of a stillborn child. The current tax structure lacks financial parity. Parents of a baby born as early as 17 weeks with a heartbeat, who dies soon after birth, can claim that child as a dependent on that year’s taxes, while parents of a baby who is stillborn as late as 42 weeks cannot. The harsh truth is that a child that never takes a breath is not recognized as a person, is not covered by insurance, and cannot be claimed as a dependent under the current tax law. Recently, my husband and I testified at the Ohio Statehouse about House Bill 507. We spoke of our daughter, of statistics, of the cost of birth, cremation or burial, funeral, mental health resources, and missed work time for families of stillborn babies. I asked the Ways and Means Committee of the House of Representatives to support this legislation not only to alleviate the financial burden placed on families whose child dies right before birth, but most importantly, have my child recognized by the state of Ohio. I told them, my child Lydia Joanne Welliver was here. She existed, and she matters.
Here’s where we need your help: we are hoping that Ohio residents will reach out to their legislators to show support of this bill, and we’ve created this easy tool to do so: https://www.votervoice.net/STARLEGACY/campaigns/58031/respond. Please take a moment to show your support for this bill and share this link widely.
Soon, Lydie would be three-and-a-half.
In almost three-and-a-half years, here’s what I’ve learned: I don’t get to mother Lydie the way I planned, but I still get to mother her. She is an important part of our family and she remains an active part of my life. I get to make sure her short life has an impact on the world.
I heard once that this experience – of losing my beloved child – could make me bitter or make me better. At this time, the idea of losing my daughter and becoming better seemed ludicrous. Laughable. Absurd. I had no idea how to take this devastation, this crippling grief, and turn myself into a better person.
What I’m learning is that it’s not the grief that is going to make me better. It is my daughter.
It is Lydie. My much-loved, much-wanted, beautiful daughter.
I wish I could go back to myself during that cruel wheelchair ride out of the hospital and car ride home and tell myself: “This is not the end of Lydie’s story. This is not the end of the relationship with your daughter.”
All the plans I had for Lydie, for our family? They don’t get to happen, not in this lifetime.
And I know I will grieve that for the rest of my life.
But like any other three-and-a-half-year-old, Lydie’s story has just begun
*This story is a guest blog post written by Heather Johnston Welliver. She is the mother of three children: Benjamin, Lydia, and Josephine. Lydia was unexpectedly stillborn when Heather was 34 weeks pregnant. Heather and her husband Justin founded the Ohio Chapter Chair, Star Legacy Foundation and are passionate about their advocacy work to lower the alarming rates of stillbirth and support grieving families. They continue to speak Lydie’s name and share her story whenever they can.
Guest blog posts are an opportunity for contributors to speak what is on their hearts and do not necessarily reflect the views of Alive In My Heart or its board members. Thank you, Heather, for sharing your story and your precious daughter with our community!