Pregnancy and Infant Loss Emily’s Story

My name is Emily and I am 26 years old, studying a Bachelor of Psychological Science. In 2019 my partner and I decided to start a family.

As I finished my final exam for my second year of my undergraduate degree and packed my bags for a weekend away at a yoga retreat, I began displaying the typical symptoms, further proven by my lack of yoga and excessive sleeping through the whole retreat! The following Tuesday, my midnight test confirmed all suspicion, and thus began what should have been the most exciting journey in my life so far.

I remember the bizarre “shadow” on the screen at my eight weeks scan, still amazed such miracles occur in this world. My early days were by no means easy, in fact I needed Ondansetron every day just to get out of bed. I was admitted to hospital once before Christmas for dehydration, and in hindsight probably should have presented a few more times.

The new year rolled around and more exciting scans took place. At 19 weeks I met with the immunologist and obstetrician of the Maternal Fetal Medicine Unit (MFMU) to discuss my care given an existing diagnosis of Lupus, classed as a high-risk pregnancy factor. During this meeting it was decided I was effectively in remission of Lupus and therefore it wasn’t necessary to continue under the scrutiny of high risk care for scans and tests. I left with my referral form for my next scan.

After my next scan at 23 weeks I received a phone call from one of the midwives on the M3 team who was handling my antenatal care. Baby’s belly measured a little small (“baby probably just picked poor timing to empty the bladder!”). Just as COVID hit, I was to come back in for a follow up scan to confirm all was good. Except it wasn’t. Reggie’s bladder was still small, and she was sitting below the norm for growth rate. To explore the possible explanations, I consented to bloodwork and an amniocentesis.

Twenty-four hours later we received the preliminary results of the amniocentesis: our baby did not have Down Syndrome, Trisomy 13 or 18. A wave of relief. In a couple of weeks we’d could expect an explanation and be able to move forward accordingly.

The following Friday I received a phone call with a concerning update. I can only assume it is because of COVID we were not invited to attend a face to face meeting with the obstetrician. The results of testing were inconclusive. My partner and I were required to have bloods taken, which would provide more answers in another two weeks.

I remember the day clearly. I’d finally stopped worrying. What could I do? I had a skip in my waddle as I said goodbye to my partner for the morning. I came back out to him five minutes later after receiving the call. Our baby had the 1q21.1 deletion, a chromosomal condition associated with learning disabilities, developmental delay, infection, heart problems and other possible issues. The list went on. At midday we attended a teleconference with geneticist Matt Edwards who detailed these factors and more.

The 1q21.1 deletion is incredibly rare. A sample of 1000 people in the “normal” population would find no carriers; a sample of 1000 people with some form of disability might find 10. Less than one per cent of an already minority population. It was during this teleconference we were presented with the option of termination.

I was 28 weeks pregnant, spending the weekend planning my child’s funeral. The service: a theme? Songs? Did we want to say something? Write something? My heart dropped when thinking about surnames. We weren’t married. Would Reg take my name or his? Should we get married? What will my baby wear? What would I wear? Did we want a viewing?

On the Monday I presented to the John Hunter Hospital for psychiatric assessment, and a consultation over reviewing the choice we were making. It required the obstetrician, neonatologist, social worker and psychiatrist to sign off on the ethics application. I needed an ethics committee to give me permission to send my sweet baby to sleep, when she should have been coming into my world – and staying.

Forty-eight hours later I presented to the hospital again, having been approved by ethics. On this day I felt my baby kick for the last time. I went back home, to prepare to return for the third time on the Friday morning to be induced.

Regina Rose was born Saturday, 9th May at 9am. I was 29 weeks pregnant and it was the day before Mother’s Day. I am so in love with my beautiful girl. She is perfect, slender fingers, cherry red lips and the most perfect button nose. It is with thanks to Heartfelt namely Danielle Helmers, who captured such precious memories I will never have to be without. Support flows in from many corners, friends and family first and foremost, but also Bears of Hope, Red Nose, and Impressionable Kids who are all dedicated to helping hold on to as much as is possible of our sweet baby girl.

The following Wednesday 13 May, I held my daughter in my arms for the last time. Nothing will ever fill that void. To love and anticipate this precious life only to have it whisked away. It’s the kind of heartache other parents can sort-of imagine but perhaps never truly grasp.

For those who haven’t had children, it is possibly even more unbelievable. And this highlights the desperate need to open up and start talking about stillbirth and infant loss. The statistics haven’t changed in Australia in over 20 years. Losing a child is a devastating, isolating and lingering pain.

Outpourings of love come in hard and fast. And then stop.

Caring offers of “reach out if you need me”, “time will heal”, “the hard part is over”.

The hard part has just begun. We must now navigate the rest of our lives without our baby.

The months that followed saw the breakdown of our relationship, and so I now find myself at square one. It’s definitely an interesting element to add to the journey of online dating. “Do you have children?”, “How many?”, “Do they live with you?”. Time will tell how that pans out. It definitely weeds out the faint of heart.

To remember Regina, I started Cakes for Regina, my little cake business which dedicates $50 from all orders to organisations associated with supporting bereaved parents.

I hope to slowly be able to begin introducing the topic of conversation of loss while also remember Reggie through helping others celebrate their life milestones – with cake.

Northern Cemeteries is holding a Virtual remembrance service for pregnancy and infant loss. Read more.