This is My Story - Mary

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 by Tommy with his brother, mum and dad

I found out I was pregnant on a Tuesday morning in March 2023. It was the earliest I could possibly test, so I was a bit shocked (but not surprised) to see "pregnant" staring back at me. It was our first month trying. I was so ignorant at the time about how rare it was and how lucky we were to fall pregnant so easily.

I went to work and was so giddy all day. This little secret I carried. Just me and this little dot - I was truly euphoric.

I told my husband, Alex as soon as I got home. Nothing special, just showed him the test. We went to Kmart that night to buy a onesie because I was so excited. It was nothing but total joy to be pregnant.

I was very sick for the first 18 weeks or so. I would be lying if I didn’t say it took a toll on me mentally, but I kept trying to focus on the end point, which was bringing our baby home. 

Our 20 week morphology scan was when things took a turn for us. We had a scan on a Friday. Our sonographer was struggling to get all the images she needed. She told us it was because baby was not in the right position. After some time she told us our time was up and that we’d have to come back Monday for another appointment. 

We spent the weekend in hospital as I had some bleeding. This turned out to be nothing serious, but it was a rather stressful weekend. I remember thinking this was our little hiccup for the pregnancy and now everything should be good.

I was feeling less nauseous and I wasn’t even thinking about the additional images we needed to get for the morphology scan. 

Monday came around and we returned to complete the missing images for our morphology scan. We were greeted by a different sonographer, who introduced herself as the senior technician.

My heart dropped a little in that moment. The issue no longer felt as simple as not having been able to get the right pictures.

As she completed the scan she explained that they had found three simple cysts on my baby's kidneys. During our Friday scan, the sonographer had actually told us that she wasn't able to get the right images of my son's brain. The new technician explained that kidney issues can be a sign of a bigger problem in the brain. So when they saw some cysts on his kidneys, they were very worried about his brain.

She told us that she got the pictures she needed of his brain, which was a relief. She did say he had a bit less amniotic fluid than she would expect.

She wasn’t too worried, but she did tell us that we would be referred to the maternal fetal medicine unit at our hospital for a more in-depth scan. Leaving the appointment I felt a bit anxious. I didn’t have any concept of how serious a kidney issue could be. I just felt a bit worried, as you naturally would. 

My partner Alex encouraged me not to google anything, as it wouldn’t be helpful. I wish I could say I didn’t, but eventually curiosity got the better of me and I started to google during the one and a half week wait until our appointment at the hospitaI. I was pretty horrified by what was coming up. A large spectrum of possibilities loomed, from not all that serious to very very serious.

Our scan was on a Wednesday. It took a long time and was very comprehensive. I burst into tears as I lay on the bed.

A flood of emotion hit and I became very aware of how much I’d been carrying this worry. I was trying to not catastrophise the situation before we knew anything concrete, but I was very very worried. 

At the conclusion of this scan, our sonographer and the head of the department agreed that it seemed like baby had a horseshoe shaped kidney. While it’s an anomaly, they said people live normal lives with it and we shouldn’t worry. We would just have to come back at 26 weeks to confirm with another scan. I will never forget walking out of the room and hearing her say, “Please don’t worry.” So we didn’t.

We allowed ourselves to exhale and get excited. We went to Baby Bunting that afternoon and bought him a little outfit. We even started ordering bigger items like the bassinet and a nursing chair. It was starting to feel real and I couldn’t wait. 

The following six weeks felt uneventful. Everything felt simple and exciting. How I imagine most people spend their whole pregnancies.

We had been talking about names and had a few shortlisted. One specific memory I have from those weeks was a random day when I was in the shower. A name came to me. Thomas (Tommy) Denbigh Jones - and a song simultaneously popped into my head. It was "You are my Sunshine.” 

This name wasn’t on our shortlist. I had previously said I didn’t like the name Thomas. It felt like my son was revealing himself to me. As I was singing the song I became aware how sad the lyrics are. This felt a bit scary and strange. It made me cry singing them. I didn’t think too much about it after that. Other than now knowing our son’s name was likely Tommy. 

The day of this 26 week scan rolled around and I felt really off all morning. I was fidgety and anxious. I didn’t know why, as they said it was just a precautionary scan. Confirmation of what they had already seen.

The scan took place with our sonographer, who was silent the whole time. I didn’t think much of this as she reiterated what she had told us during the first scan: which is that she had to focus and wouldn’t talk much.

She sent us into the waiting room and said she’d call us back in when the head of department was ready to see us. It felt weird. She seemed frazzled. I honestly don’t remember much of what was said when we returned into the room. His first words to us were. “I’m really worried.” After that I remember words like “no fluid, termination is an option, almost universally fatal.”

My midwife called me once we left the appointment. The first thing she said was “I’m so sorry”, to which I responded, “Did that man just tell me my baby is going to die?” She said yes, and our world imploded. 

My husband and I made the decision to continue with the pregnancy and not to undergo TFMR. We met with many specialists who explained all the potential outcomes. We were warned that our baby may die in the womb, that he may be born alive and die shortly after or that he may be born and they would be able to work on him and stabilise him.

In one of our appointments, the renal specialist commented that babies with kidney issues develop very slowly. It's possible that he could be in the hospital for over a year if he did miraculously survive. She said "I know you think you’d manage now, but just think about the toll that may take on you."

I remember feeling so angry about that comment. I would have given anything to spend a year in the hospital with my son.

It was a very surreal time. To wake up every morning still pregnant but with no idea for how long. I kept asking people if there were any resources for people in our situation. I kept getting the same response - “not really.” Our baby was currently alive but would likely die. The anticipatory grief was horrific. 

I started feeling what seemed like mild contractions on a Saturday when I was only 34 + 2. They continued at different intervals into the Sunday. They were pretty close together at this point, so we went in to get checked. There were no signs of labor so I was sent home.

Contractions picked up again at about midnight and increased in intensity until we returned to the hospital in the early hours of Monday morning. I quickly requested an epidural as I was honestly not doing well.

I was in shock at going into pre-term labour. I felt like my time was being cut short. It all felt like too much. 

My sister was coming as our support person and she arrived shortly after the epidural was in. It was about 9am at this point. I remember my midwife telling me that the combination of the epidural and being a first time mum might mean it was going to be a long labour.

It was not a long labour. The first time she checked me I was 10cm dilated and baby was coming.

The midwife asked, "Are you ready to meet your baby?" and I burst into tears. Not for the reason that most mums would - with joy and excitement to be done with labour and pregnancy. I was devastated for it to be ending. This meant the clock was on until our baby died. 

Two beautiful NICU doctors came into the room shortly before Tommy arrived. When he came out he was silent. He flopped onto my stomach and I was crying and saying “He’s not okay, he’s not going to be okay.”

His kidney condition meant that his lungs never developed. When he came out he couldn’t breathe on his own. The nine weeks leading up to his birth hadn’t prepared me for that moment. There was a visceral desire, a desperation for the doctors to be wrong. 

Alex cut the cord and Tommy was quickly taken over to the resus bay, where the doctors worked on him to help him breathe with an oxygen mask. The head of NICU came in at this time and told us we needed to decide if we were going to intubate Tommy or remove the oxygen and let him die.

It felt like I was lying there just starting at him for an eternity, unable to make that decision. He eventually spoke up and said Tommy was doing better than he would have expected so why don’t we intubate to give you a bit more time. 

I held Tommy only very briefly after he was born. It was a matter of minutes (if that) before he was in NICU. When he was in his bed in NICU, I felt like I couldn’t get close enough to him. He felt so fragile. I was so worried about bumping a really important cord or hurting him. I stroked his skin and talked to him lots.

We were also able to give him a little wash down and get him dressed before we took him into the room to remove his breathing tube. It was then that I held him. Like fully held him, snuggling him in close.

Alex got to hold him, and my sister held him too. I remember feeling so incredibly proud sharing Tommy with her. Like "That’s my baby, isn’t he amazing."

He was (and is) such a beautiful baby. He had Alex’s chin and eyes, he had my nose and hair. We were so surprised how alert he was for such a sick little guy. I got to stare into his eyes and connect. I could just see in his eyes what a wise and kind person he would have been.

We cried on and off the whole time. I remember wanting to be present for Tommy. It was really important to me that we weren’t hysterically crying during his little life. I wanted to be brave for him, so all he knew was love and peace. There were definitely still a lot of tears, but I hope it was peaceful for him.

We sang him lots of songs as he died. One of them was "You are my Sunshine". Which has become his song. I find it quite crazy that this song came to me all the way back at around 20 weeks pregnant. I truly believe Tommy revealed himself to me in that moment, gently trying to tell me he wasn’t staying on this Earth. 

Losing Tommy has been an ever changing experience. Those first days after he died, I had to make a conscious effort to take every step forward. Walking across the road to get a coffee, simply to get out of the house meant stopping every other step to break down and sob.

In those early days my grief was visceral. A physical pain that felt so intense and raw I thought it would kill me - and I wanted it to.

Now there is a new wave of grief as we raise our 8-month old rainbow baby. To see him outgrow his ‘big’ brother is heartbreaking. The grief doesn’t go away, it just changes and evolves. 

Some advice I would give is try to connect with other loss parents. Whether it’s online or in person, try and do it. It can be a very lonely journey and no one will understand your unique pain like they do. It is a space to feel and say all the big things with no judgement.

I believe losing Tommy has made us more grounded and gentler people. Our world has gotten a lot smaller since he died. We find a lot of contentment in the simple things. Spending time in nature, and time with good people, reading a good book and eating delicious food.

I also believe he has made us the parents we are to his little brother. We don’t take one second for granted. We are so aware of how blessed we are to now have a healthy son to raise. We always like to say that all of our future children don't replace Tommy, but exist because of him. 

A sadness I have felt is that we will never have a family portrait. Tommy was our firstborn, so all our children that come after him will never be in a picture with him. We will never have a family photo.

Receiving his Possum Portrait means we can have a symbol of our family together. The way it should be. There aren’t enough words to describe how much this means to us. We will treasure it forever.

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