Grieving parents share their heartbreaking story of realising they will never watch their baby boy grow up.

*TRIGGER WARNING some readers may find this story distressing.

“I don’t know what he’d look like, what his favourite food would be, watch his first steps, squeeze him tight has he takes first falls, or listen to him say mum/dad for the first time. I’ve never had the privilege of tucking him into bed, and I will never be able to watch him grow or smile at me.”

“It all began when my husband and I walked into the Queensland Ultrasound for Women, we were so excited to see our beautiful baby again, and finally find out the sex, we couldn’t wipe the smiles of our face”, shares Justene of the day she found out her unborn baby was suffering from a condition that sadly affects eight children every day in Australia.

Related: The terrifying condition affecting 8 babies everyday in Australia

Justene shares, “As they scanned our baby everything seemed so perfect, everything looked perfect should I say. Only to find out at the end Blaze had a heart condition. We walked out absolutely devastated, crying would be an understatement, we didn’t even think this would have been a possibility. We had an appointment with the Cardiologist around 1 week later to find out our options and what exactly we were in for.

“As my husband works away he was unable to make this appointment so my twin sister travelled 4 hours to be with me alongside with my mother. I didn’t sleep I was so nervous, I felt sick leading up to the appt. I recorded the whole appointment and I walked out feeling surprisingly somewhat relieved.

“Blaze was diagnosed with Transposition of the Great Arteries (TGA) we were told he would have an operation when he was 1 week old to switch his arteries back around. This is something they had seen and done all before. I have the piece of paper that I received stating this is a 98% chance success rate, although this rate was extremely high which gave us comfort our little boy still had to undergo a major operation in his first days off life.

“I was told that I would be spending around 1 month in hospital with Blaze but after that everything will be good as perfect and Blaze will live a normal healthy life just like you and I!

“While Blaze was in my belly everything was tracking on like any normal healthy pregnancy, he was so nice and comfortable and growing just beautifully, after our regular appointments with the cardiologist we felt comfortable that everything was going to be OK with our son, we then went on to buying our first family home, as our 1 bed unit wasn’t going to suffice, to upgrading our car as our 2 door wasn’t going to be practical, to buying the nursery package and setting it all up just so it was perfect and ready to go when we brought him home. We installed the baby capsule into the car, and organised a beautiful baby shower with my Twin sister who was also pregnant at the same time.

“Then come the day Trent and I walked into hospital. with our baby bag ready to meet our beautiful son. Knowing we were in for a rough time ahead, but at the end of it all having everything we have ever wanted.

“The birth was great, Blaze was just perfect and comfortable throughout the whole labour. 12 hours late ,they put Blaze straight on to my chest at 5.37pm on the 2/2/15, whilst Trent cut the cord, Blaze made his first little noise but was whisked away to the next room. His heart rate when from perfect to 70bpm within seconds. I still had in my mind everything was going to be fine, as I had prepared myself that this was going to be a part of it all.

“Then they started CPR right in front of Trent, Daddy didn’t leave Blazes side at all and was their through the whole thing even when staff didn’t know he was there in the room, they were so focused on reviving our son. Blaze was rushed to NICU as they continued CPR which was absolutely traumatising for Trent watching them continually inject steroids into his son and nothing was happening, no response from Blaze. At this stage I was still down stairs with the midwife, next minute a nurse raced down and said Hayley, Trent needs you upstairs immediately, at this point I then knew something was not right… My heart just sank. I demanded they put me in a wheelchair and take me to my baby. I walked in on the most horrific site that a mother could ever have imagine.

“A team of around 8 people trying to bring my baby back to life, they had been trying for an hour and a half I vividly remember, 1,2,3 breathe, 1,2,3 breath 1,2,3, breath. The cardiologist come over to us and said if we continue proceed Blaze will be brain dead. It really hit home I have NEVER experienced such pain in my life nor will I ever experience this much pain in my life, there are no words to describe how we were feeling, It’s a crippling, all-consuming feeling of utter suffocation, and a memory that will haunt me for the rest of my life. In that moment, I felt trapped as if the ceiling was literally crashing down on top of me. I couldn’t breathe, I lashed out, I screamed, and felt like throwing up…I know a huge part of me died and went to heaven with Blaze that day.

“I couldn’t bear the thought of leaving my son, but I knew I was just prolonging the inevitable. As time went on, he was looking less and less like the flawless child that I brought into this world. I couldn’t keep watching him deteriorate in my arms. I knew he couldn’t feel any pain, but I was feeling it for him, and I had reached my breaking point. I wanted to die with him.

“Around 10pm we dressed our son in the clothes we brought him and spent some time with Blaze as I passed my lifeless son around to my family to meet him.

“We arrived home empty handed only to realise that we had to organise a funeral, From choosing his songs, and to fork out the cost of our sons funeral.. We didn’t know we had to do this, thank god for my family that did most of this for us, then organising a list of people of who I should invite. And remember saying to myself why would I invite anyone? why would I waste their time and money on someone they didn’t even get to meet? Its cruel how your mind thinks when you’re not thinking.

“Unfortunately the horrible journey had not finished there, we were made to go into Centrelink to get Blaze a Medicare number but to only to say that he has passed away. How cruel can the government be? Having to ring up my private health to say Blaze has passed away so we didn’t weren’t charged a massive invoice from the hospital. To receiving his death certificate in the mail. We had bereavement officers call us daily, and psychologist’s appointments we attended which were all just crap, they weren’t going to bring back my baby, so what’s the point?

“From going to the gym and other places and people that saw me pregnant now congratulating me of something that I don’t even have anymore, and me saying thank you as I didn’t want to accept he was gone. To going to our local markets to pick up fruit and vege to us both breaking down in tears as all we heard were babies and children crying around us.

“To getting a phone call from the crematorium to say Blaze is ready to be picked up, and they pass our son to us in a plastic container to take home.

“Infant loss is nature’s cruellest practical joke. It’s investing all of the required time and effort into pregnancy, only to be robbed of the result. It’s cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.

“It’s worrying that you’ll forget what your child looked like and snapping an album’s worth of photos that no one will ever ask to see. It’s sobbing so hard you can’t breathe and wondering if it’s possible to cry yourself to death.

Related story – MoM’s share what they wish people knew about miscarriage and pregnancy loss

“Losing my baby is handing off a Moses basket to the nurse who’s drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms and an empty car seat ready to go for our son to take him home.

“It’s boxing up brand new baby clothes, unpacking the baby bag, taking the capsule out of the car, pulling down the nursery and buying a 24-inch casket. It’s sifting through sympathy cards, been given tablets at the hospital to stop lactating, clutching my baby’s blanket to my chest in hopes of soothing the piercing ache in our heart.

“It’s resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you’ll have another baby, as if children are somehow replaceable.

“It’s watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss. It’s listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you’ve buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.

“Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It’s recognizing that, while they may not mean to be hurtful, the fact that they don’t know any better doesn’t make their utter lack of empathy one whit easier to bear.

“I don’t know what he’d look like, what his favourite food would be, watch his first steps, squeeze him tight has he takes first falls, or listen to him say mum/dad for the first time. I’ve never had the privilege of tucking him into bed, and I will never be able to watch him grow or smile at me.

“Infant loss is more than an empty cot. It’s a LIFE sentence, adds Justene.”

My story

Justene and Trent’s story was like a stab to the heart for me. Having been through a very similar experience, but thankfully to still have my son with us makes it so much more surreal. Read our similar story here.

Did you know eight children are born every day in Australia with a heart defect? Sadly, every week four precious lives are lost.

Childhood heart disease, otherwise known as CHD or congenital heart disease, remains one of the most misunderstood and misrepresented health related issues in Australia.

It is the biggest cause of death of babies under 12 months of age, yet has no known cure.

February is Show Your Heart Day, held annually on Valentine’s Day, to raise much-needed funds to provide support for Aussie kids with childhood heart disease as well as fund vital medical research.

So show your heart this February 14th to join the fight against childhood heart disease!

HeartKids is encouraging everyone to support its #8toomany #showyourheart campaign so that CHD stays firmly on everyone’s radar.

Join the fight against childhood heart disease!

If you are struggling with the loss of an infant please know you are not alone. You can find some helpful resources and contacts below.

The Pink Elephants
https://pinkelephantssupport.com/feel-home/support-resources/

Bears Of Hope Pregnancy & Infant Loss Support 
Grief Support: 1300 11 HOPE
Email: support@bearsofhope.org.au

PANDA
PANDA National Helpline (Mon to Fri, 9am – 7.30pm AEST) Call 1300 726 306

Sands.org.au
24 hours a day, 365 days a year (including Christmas Day) by dialling 1300 072 637

Lifeline 13 11 14

Our thoughts are with all those families struggling with the recent loss of their tiny little angel.

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