In January 2019 I gave birth to a baby girl who was born, as they say, ‘still’. The devastation of this event and the pervasive impact it had on my life and on the people around me cannot be understated. There is a before and an after, in our lives.
It has taken me some time to find the courage and the words to share my story, our story. The story of our baby Eden, myself, my husband Tahl and our son Sonney.
I was happily pregnant with Eden, whilst running around after Sonney who was one. We had just returned home from a family holiday, and I was booked in for my 20-week scan (at 21 weeks), the day after we returned home. We waited nervously to go in for the scan. I was worried. I am always worried. The 20-week scan is a big important scan. These types of thoughts were always running through my mind. Tahl tried to reassure me as we waited.
When the sonographer came to welcome us in, I was comforted that it was the same person who had done our 20-week scan with Sonney. I liked her.
As she started scanning, I noticed that she was quiet. I recalled from my first pregnancy that she stopped at every organ, at the hands, the feet, the face, to explain what she was looking at and what she could see. She was not talking this time and I was acutely aware.
Eventually I mustered up the courage and I asked if she was seeing everything she would expect. She replied that she wasn’t and that there were severe abnormalities with our baby’s heart and brain and that she would page the doctor. She passed us a box of tissues and left the room, and Tahl and I cried together, me still in reclined position, with my belly exposed and covered in jelly.
The sonographer returned with the doctor who confirmed the results, that our baby, though still alive, had abnormalities that were incompatible with life. She then left to call our obstetrician and we were ushered into a private waiting room, one that I never knew existed. We were now on ‘the other side’ – the side that hopefully no one ever gets to see, but there we were.
I don’t know how we got through the next few days. Our scan was followed by an appointment with our obstetrician (who booked us in for a termination on the following Monday, it was a Thursday), then an amniocentesis and then four nights of no sleep and lots of anger and tears.
I was admitted to the hospital on Monday at 7am and did not return home until 9am the following Thursday, having delivered our baby at around 4am that day. Those four days in the hospital were traumatic and exhausting. The days and weeks that followed were difficult too. Grieving a child lost, that you never had the opportunity to meet is a different type of grief.
Time helped, and so did Sonney. With my head a little clearer, I started to reflect on my experience. I thought about all the things that I had been through, from diagnosis, to delivery, to burial. The systems, the hospitals, the care. The nurses, the midwives, the doctors. The paperwork, the specialists, the appointments. The list goes on.
And a month or so after returning home from hospital, I sent an email to the head midwife at the hospital with some of my thoughts on what might be helpful to other women and families who were going through the same thing. I wrote:
“It would be helpful to know before coming into the hospital what the room will look like, that you will be in a birthing suite, that there will be nowhere to sit. That there will be women having babies around you.”
It did not occur to me that I would be delivering my baby, who would be born still, in the same room I would have been in, had I been delivering a baby who would be born alive.
“What happens to your baby after the birth, where does the baby go if you want a post-mortem, or if not.”
We were in so much shock before going to hospital, we did not know the questions to ask, or the things to think about.
We had not considered whether we wanted to have a post-mortem and do further investigation. While we ultimately decided to do so, I would have liked to have given this more thought, in advance.
I found it very difficult to leave the hospital without understanding where my baby would go. I called up the hospital after we left as I felt very insecure not knowing where my baby was.
“I would have liked to have known in advance that there are options for spending time with your baby post-birth. That the midwives and nurses will ask you at the start of every shift what your preferences are on delivery. This information must also be communicated to your doctor.”
I found it very confronting being asked these questions every few hours by the next midwife or nurse who was on shift. I would have much preferred the new nurse to read the notes provided by the last. Notwithstanding my (many times) communicated preference to hold our baby upon delivery, on her arrival, and after our doctor pointed out the visible abnormalities he could see, our doctor and midwife whisked her away into the corridor. We were left sad, ashamed and confused. Through tears Tahl left me to find the doctor to ask for our baby to be returned to us. Had our baby been born alive, we would not have received this treatment.
“Navigating next steps – the medical journey post-birth is not clear. It would be good to be given information re genetic testing, geneticists, genetic counsellors and the path to conceiving again.”
This was a journey that we navigated on our own. Fortunately, a friend is a genetic counsellor and she helped guide us. Another friend is an obstetrician and he kindly referred me to a geneticist and talked me through what my options were. This was a path I sought out myself.
There were many more points in my email.
I recently connected with the Stillbirth Foundation Australia and was given the opportunity to read their publication called ‘Guiding Conversations (With Your Healthcare Team When Your Baby Dies)’, which are due to be released in November this year. It was reading those guidelines that prompted me to dig out my earlier email.
Seeing that so many of the points in my email were reflected in these guidelines shows that my experience, unfortunately, is not an exception or an anomaly. But it also reassures me that work is being done to help improve the care that is given to women and families who experience stillbirth.
Since losing our baby, we welcomed our son Archie, who is 18 months old.
In sharing my story, I hope to contribute to the growing dialogue and discussion around stillbirth and in doing so, to raise awareness and effect change.
Every day in Australia, six babies are stillborn. It’s a staggering statistic that requires urgent funding into research to change. This October help the Stillbirth Foundation do just that, by taking part in their online silent auction. Funds raised will directly go to funding the foundation’s 2021 research grants to be announced later in the year.