Greta Thunberg might be a household name across the world. But closer to home, young…
October is Pregnancy and Infant Loss Awareness Month around the world and October 15th each year marks International Day of Pregnancy and Infant Loss Remembrance.
On the evening of 15 October, Canberra landmarks including the National Carillon and Telstra Tower were lit up in pink and blue in memory of all the babies who are no longer with us.
We share our story with you in honour of all babies and children gone too soon and we particularly remember them during this special month of October.
This story, our story, does not come with any trigger warnings, and nor should it. Our social media feeds may often share photos of our lifeless babies. Our home may have memories in every corner, of our two daughters who we will never get to hold again. Our nursery sits silently, with dust gathering on the empty cot and unused change table.
This is simply a very sad story. But this is our story, this is the story of Bonnie and Steve Carter, as child-less and bereaved parents. This is a snippet of our lives since 2016—facing the tragedy of stillbirth twice over and facing the heartache of pregnancy loss and recurrent miscarriage. And we tell you our story with no trigger warning required.
Grace Carter should now be three years old. We would have celebrated her birthday this year, probably with a princess party in the park, with lots of her family and friends celebrating all around. Sadly though, we will never get to show Grace truly how loved she is or to ever celebrate her birthdays.
Grace was stillborn just shy of 20 weeks gestation in June 2016. Grace was our firstborn; the start of our family.
After two years of marriage, buying our first home in Canberra and trying to conceive for close to a year, she was the new addition to our family we had longed for. Grace was stillborn due to a severe but rare congenital heart deformity known as Hypoplastic Left Heart Syndrome (HLHS). Grace was diagnosed with HLHS by world-renowned cardiologist, Dr Stephen Cooper, at Westmead Children’s Hospital at 18 weeks gestation.
Dr Cooper broke the news to us that this was one of the most complex cases of HLHS he had seen in an unborn baby and that, with only half a heart, there is no way Grace would survive the pregnancy and certainly not survive labour or the subsequent minutes after birth.
So, in June 2016, Grace was brought into the world. We held her for as long as we could, taking photos and making memories. She was perfectly tiny and too beautiful for earth.
In the following months and in the coming year, we met so many other incredible families through the Australian baby loss community. People who understood our pain. Through charities and support networks like Bears of Hope, Red Nose and SANDS, we made many special friends. And many of these friends have their own earth-shattering stories of stillbirth.
I found myself wondering how they did it? How they survived? How did someone survive life after stillbirth? Particularly those families who had lost their babies at later gestations or who had seemingly thought their pregnancy was complication free, only to be told “I’m so sorry, there is no heartbeat.”
We had not had that particular experience and so I could not fathom how those mothers and fathers survived such earth-shattering moments. That was until the 4th of December 2017…
Before I go further, let me introduce you to the term ‘Rainbow Baby’. A Rainbow Baby is a miracle—a very loved and yearned for baby. A baby born after the loss or losses of previous babies. A baby born after the “storm”, or the rainbow after the storm.
And, can you believe it, in July 2017, a year or so after we had said goodbye to our first born Grace, we were having our own Rainbow Baby! We were finally getting our chance to bring home our own precious baby to love and to hold forever.
The months flew by, scan and after scan, we had a perfect baby on the way. Another girl, this time with a perfectly formed heart. She was to be due in April 2018 and we had already named her Matilda.
On Monday 4 December 2017, I visited The Canberra Hospital’s Fetal Medicine Unit for a standard midwife appointment. Because of our previous loss of Grace, I was having fortnightly midwife appointments and monthly ultrasound scans, all through the Fetal Medicine Unit. At 4 pm on Monday 4 December, I headed to the Fetal Medicine Unit from work for my fortnightly appointment.
First things first, as usual, the midwife lay me down on the hospital bed to feel my belly for growth and scanned my belly with the doppler to check the heartbeat. All pretty standard stuff. The doppler scanner was “playing up” so they moved me into one of the ultrasound rooms, with a sonographer ready to scan my big, growing belly. I had felt Matilda moving around in there earlier in the day, so I was not worried.
But within a minute—perhaps it was only 30 seconds, I’m not sure anymore—the people in the room froze. The midwife Alison, who I had come to know very well now, grabbed my hand tightly, and the sonographer rested her hand on my leg and said, “I am so sorry, she’s gone, there is no heartbeat.” She was gone, her heartbeat was null and void, she had died. Just like that, gone. Again. Another baby was about to be ripped from away from us. We were completely broken.
I was at this appointment on my own—my heart shattered into a tiny million pieces making the phone call to my husband to tell him to leave work and come to the hospital immediately. He panicked, I panicked. The nurses and midwives held me, let me cry, let me howl. I screamed that entire hospital down! I could not believe we were going through this again. Again. We would not wish the pain of losing a baby on our worst enemy, let alone twice.
At this point we were six months into the pregnancy. Everything had been perfect. We had announced Matilda’s impending arrival to the world. We had set up her nursery, we had spent hours perusing the baby shops and carefully selecting the best furniture for our darling girl.
We had bought her beautiful clothes. We had even purchased a pram, organised her name on a child care centre waiting list. And everyone around us, friends, family, work mates, were all sharing our excitement with us. We thought this was finally our turn, our time to bring a precious baby home to love and cherish. How the hell were we going to tell everyone that it was over? How were we going to break everyone’s hearts all over again?
Once again, like an evil kind of déjà vu, Bonnie was induced for labour a few days later and gave birth naturally to our second daughter, Matilda Carter, on 8 December 2017. She was tiny and perfect, just like her big sister. Yet again, too beautiful for earth. Within 18 months we had now lost both of our daughters and had no living children.
And now further years along, the shitty-ness of pregnancy loss has certainly reared its ugly face again. We have gone on to lose two more pregnancies due to early miscarriages and we are left still with empty arms and an empty, unused nursery.
The pain and raw heartache is very real, but (and this is where you can wipe away the tears and fill your heart with positivity) we have survived. And we have survived in the most spectacular ways.
Let us tell you about that, in the hope that someone else reading this who is experiencing the grief or loss of a child, pregnancy or family member, or for anyone who feels life is really testing you right now. Let us share our story of hope, so that you know you are never alone and that you certainly don’t have to give up when life gets tough.
Since 2016, we have done everything in our power to honour our daughters Grace and Matilda, all the while doing proactive things in the community to help us survive our own grief.
We have run (no, briskly walked, with zero training just 10 weeks after Grace’s passing) the 14KM in the City2Surf Sydney, raising enough money for Bears of Hope to create 28 Packages to go to 28 individual Australian families who also have to leave a hospital with empty arms.
We bought a 1974 KE20 Toyota Corolla, with full race car setup, and raced in the local Heartkids Hillclimb event, raising needed funds and support for children born with congenital heart disease.
We fundraised for and managed the redesign and renovation of a new bereavement suite within the Canberra Hospital’s Fetal Medicine Unit. We organised and ran Canberra’s inaugural Bears of Hope Mother’s Day High Tea, which we will continue to hold in future years.
We have spoken at Parliament House before the Senate Inquiry into Stillbirth Research and Education, an effort that has now helped see the Australian Government commit millions of dollars to stillbirth prevention and awareness.
We have helped arrange the pink and blue illuminations of Canberra landmarks on October 15 each year for International Day of Pregnancy Loss Remembrance Day.
We are also in the midst of now helping arrange Canberra’s first “Choosing Hope” memorial walk in 2020 to be held during October for Pregnancy and Infant Loss Awareness Month.
To top all of this off, I was named the 2019 Lifeline Canberra Rising Woman of Spirit this year and the recognition that has come with this award has helped heal our hearts so much.
And you mark our words, this is all really just the beginning of all that we want to do to support Australian families and our Canberra community.
We know we can’t change the world and wave a magic wand to eradicate stillbirth and pregnancy loss. But what we can change is how families face the world again after such a tragedy of stillbirth or miscarriage; how families pick up the pieces and move forward with their lives when their baby dies.
You mark our words that we will continue working hard to support our local Canberra families who may face this pain. We are here for you, we feel your pain, we share your heartache and you are not alone.
We honour all babies and children who are gone too soon and will fight to keep their memories alive in all that we do.