This is My Story - Edward

In this series of personal stories we hear from parents who have suffered pregnancy or baby loss. We hold space for loss and grief, and we remember our babies gone too soon.

In sharing their stories, these parents are beginning to exorcise the triple demons of stigma, silence and ignorance that afflict so many conversations in the perinatal bereavement space.

Parents share their journeys and the lessons they have learned about grief, parenthood, friendship and living after the death of their baby. They tell us how they have changed, who they have become, and what truly matters now.

Baby girl Luna with her mummy and daddy

We found out we were pregnant at the end of February 2025. We'd been suspecting it for a week or so, but weren't sure. We hadn't been trying for very long, so it was a big surprise. However, a family member had miscarried two weeks before we found out about our pregnancy, so ours was a subdued celebration.

The first trimester was incredibly difficult. My wife Mercedes suffered with morning sickness every day, and the fatigue that set in was surprising. It got better in the second trimester, when we had our honeymoon in Europe.

My wife struggled in the hot Greek and Italian summer weather, but it was a truly enjoyable time. By now we were very excited.

After our honeymoon in Europe, we had our 20-week morphology scan. We received a phone call later that day asking us to come in for a second ultrasound with the doctor.

He reviewed the ultrasound the next day and informed us that they suspected something was wrong with Luna's heart. We were referred to the Maternal Fetal Medicine Unit (MFMU) at RNSH who conducted another ultrasound. They determined that there were two or three issues.

From there, we attended a fetal echocardiogram at Westmead with Dr. Forsey, who was an amazingly kind and knowledgable paediatric cardiologist. He diagnosed Luna with an atrioventricular septal defect (AVSD), as well as a hypoplastic left heart (HLHS) and aorta. Both are rare and severe congenital heart defects.

Throughout each appointment, it felt like we were given both the best and the worst case scenarios. But the best case was slowly getting closer and closer to the worst case, until there was only the worst case left.

We felt very defeated and helpless for most of the time, and most of our discussions were about how to manage all this mentally.

Both of our mothers were at the hospital when Mercedes gave birth. The midwives at Hornsby were beautiful people and very friendly and caring. Mercedes' labour was fast. Being induced, she had two of the pill cycles administered and was cramping with contractions for about three hours in total.

The birth wasn't too traumatic but it drained Mercedes emotionally. Being prepared and knowing exactly what we were in for ahead of time helped. Our parents were incredibly supportive and understanding.

Mercedes felt "empty" after everything was done. We had already done a lot of grieving in coming to terms with what had to happen - so once it was over, we struggled to feel.

We named our daughter Luna . She weighed 670 grams and we were surprised at how large her fingers and toes looked.

I work fly-in, fly-out, but have decided to find work closer to home so I don't lose any more time with my wife or future children.

This experience has been a big internal struggle for me: knowing I can't do anything, but always feeling like I need to be doing something.

Mercedes has started counselling and I intend to. She has been talking through her grief which has worked wonders for her.

What I wish I had known before baby loss happened to us is that it isn't as rare as you think. It's heartbreaking and not knowing anyone who has felt the same loss hurts even more. Finding out about the Gidget Foundation and so many other helpful charities and organisations has just told us we're not alone in this.

What I would say to parents who are recently bereaved is spend as much time as you want with your child if you get the chance.

Don't hide away and not see friends and family. You feel like you just want to be alone, but some of the best parts about having your community around you is that you're not alone and they do love you.

Having a Possum Portrait of Luna allows us to remember her every day. It will start a tradition in our family of having a baby portrait of each child hung in the house somewhere.

Many of the other mementos we have of Luna aren't the best to display openly and for our families to remember her by, so this portrait will be how she stays a part of our family in everyday life.

I'd like to say one more thing. Sometimes parents need to decide between keeping the baby and terminating the pregnancy.

Deciding to terminate is so, so difficult. But if this is you, please do not ever feel regret or guilt for making that decision.

We were faced with having a child that would have to endure a lifetime of suffering - or to have a termination. We chose to terminate to ensure that Luna never suffered. It's such a hard choice to make, but to make sure our baby isn't in pain or struggling through life, I feel it was the right decision.

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