In August 2018 I married the love of my life, John after two years together, in a movie type whirlwind romance, we just knew we were meant to be together. We hadn’t planned on a family and weren’t even sure if we could have children as I’d had past ovarian cyst issues and was told it could impact my ability to conceive. We’d decided that we wouldn’t use any contraception, and if it happened, fantastic! If it didn’t, we’d then discuss our options moving forward.
In May 2021 we found out we were pregnant with our first baby, and went through all of the emotions and excitement of becoming first time parents. Through the height of COVID, and residing in the state with the strictest lockdown laws in Australia we navigated what our new lives would look like and tried to enjoy our experience as much as possible. Attending appointments alone because partners couldn’t come dampening the excitement. The pregnancy itself was without complication, luckily I didn’t have any of the ‘unwanted’ symptoms most experience, and in January 2022 I delivered our beautiful baby girl, Azalea.
Again, we decided to let fate run it’s course, and if we ended up pregnant again – fantastic, if not, we’d discuss if we wanted to pursue other avenues to have another baby. In June, 2023 we found out we were pregnant with our second child and our lives were about to be turned upside down. The pregnancy was much like the first, no noticeable symptoms, or anything that caused discomfort, around 18 weeks we had an anatomy scan and discovered we were having a beautiful baby boy! How wonderful, and lucky for us to experience one of each, we were ecstatic, until the sonographer discovered an anomaly with our baby boys heart. We knew it was something big the entire energy in the room shifted and the sonographer kindly explained what she thought she’d found, and that she couldn’t fully diagnose or definitively tell us until we were referred to another hospital for more in depth checks. In shock, and unsure what was to come, we cried and worried about it all.
The necessary appointments were made in the following weeks, and we were being seen by the high-risk maternity foetal development team before we knew it. Hours of travelling, and multiple scans to be taken into a room with a doctor, and sonographer. You always know when they take you to a private area the news isn’t good. We were told our baby boy had a congenital heart defect – Hypoplastic Left Heart Syndrome (HLHS) a rare and severe condition where the left side of the heart is underdeveloped, making it difficult to pump enough blood to the body. The left ventricle, mitral valve, aorta and aortic valve are all affected and even with the required 3 surgeries not every child makes it through. The survival rate with surgical treatment of children making it to age 5 is 72%, and the oldest person to survive HLHS is only in their 30’s which is how new this particular surgical intervention is. We asked how this happened, was it something we did? Did I cause this condition for my baby? The medical professionals told us in no uncertain terms, we couldn’t have done anything different it’s quite literally just ‘shit’ luck for us that this happened to us and our boy.
There was no sugar coating our situation, the doctors and nurses and sonographers presented us with facts, information, and their kindness. It was like the air had been sucked out of the room, all the voices started to fade out and overwhelm set in, with uncontrollable sobbing from me, shock from us both and pity in the eyes of everyone around us.
We were presented with two options, terminate our pregnancy with special consideration from the required board to allow it to occur further along in the pregnancy than usual, or birth our boy and hope he has the ability to overcome all the surgeries and setbacks coming his way for a chance at a life together. What an awful decision to face, no one deserves to be put in a position to make a choice like that. What right did we have to choose an option on behalf of our boy? How could we comprehend this situation when we’d only just heard of this condition for the first time ever.
We wallowed in the woe is us, the why us and the what did we do to deserve this, we were angry, and sad, and exhausted. We felt our emotions, we cried, we argued, we shut down and shut each other out, and then we came back together and ultimately decided we were sent this baby for a reason, and we owed it to him to give him every chance imaginable for survival. We would continue with our pregnancy and putting our faith in his strength, our love and the care and knowledge of our team of doctors and nurses.
I didn’t want to give birth to our boy, he was safe inside me. Inside me, the placenta and me were making sure everything functioned as it should, he was growing, thriving and if we didn’t know about his diagnosis, you would have assumed it was a textbook pregnancy. The terrifying part was delivering this beautiful baby boy, and knowing that his plight and our world would change the second he took his first breath.
On February 5th 2024 our boy Vincent Alexander Deretic aptly, and affectionately nicknamed “baby braveheart’ was born weighing 3.33kgs. He arrived quickly, and was handling life on the outside so well, we got to spend a quick 15 minutes snuggling our little love, before he was whisked away for transportation a mere 45 minutes later to the Royal Children’s Hospital. The worst wait of our life was waiting for me to be discharged so that we could travel from the hospital we birthed at, to the hospital our boy had been transferred to. We were impatient, worried and chomping at the bit to be released, fortunately some hours later they agreed to release me and we set off to Melbourne to see our little boy again, where he was settled into his new ‘home’ for what we hoped would be only for the time being.
Our Braveheart was coping considerably well at first, but the medication allowing him to do so only lasts so long and so he underwent his first open heart surgery just two days after birth. Considered the riskiest of the 3 surgeries we had an anxious wait from 8am until 6pm where we received a call from the surgeon to tell us they had finished, it went well, and they would leave his chest open until safe, and ready to close again. The breath we let out hearing this news, we didn’t realise we’d been holding all day was welcome relief. Rushing to be by his side, his tiny body sedated and chest open. He was fragile and under close observation. We were forewarned that the severity of his condition meant that intervention could still be required, and wasn’t uncommon after such a big surgery. Hours later we left to get some rest for the evening, and spend time with our daughter who had just been so incredibly wonderful through the entire experience and had been taking everything in her stride.
Shortly thereafter, our little V’s blood pressure dropped, along with his SATS. It was almost as though he’d waited for us to leave, because he didn’t want us to see what he was going through. The team at the hospital worked to decipher if a clot had formed, a kink in the shunt, or another issue was the cause. Unfortunately, Vinnie had an arrest during this time. He required CPR, and was eventually placed on ECMO. Fortunately, the doctors didn’t think his heart had stopped completely, or that he was deprived of oxygen as the medical team jumped into action so fast.
We were still faced with the possibility of an impact to brain function, now we were combating this condition, and an arrest. We could only hope that the cause was because of such a little boy undergoing such a big surgery, our positive was that ECMO would allow his body a chance to rest and recuperate. We began consistently saying we were cautiously optimistic, we weren’t deluded about our situation but we had hope.
He was stable, ableit with the use of ECMO and things were looking up as he was slowly removed from it and didn’t have to rely solely on it to function. He was heavily sedated almost all of the time but over the following days he was becoming much more alert opening his eyes, looking around and we even got a few finger squeezes. The small fleeting moments you take for granted when you don’t know if you’ll get them ever again. He was puffy, retaining fluid and required dialysis to remove the fluid so he could hopefully, eventually come off the ECMO machine.
The nurses especially, who do this day in and day out with severely sick babies are just a testament to the good in this world. Even sedated, and newborn our boy still had personality and wrapped the nurses around his finger, he was affectionately referred to as baby braveheart, and little old man as he looked like he was ready to don a suit and join the rat race with a briefcase at any moment in the morning commute. He was cheeky, preferring one side to another and let the nurses know when he didn’t want to face the way they wanted, usually by dropping his sats or heart rate.
He was so strong, and fought so hard to improve daily, the nurses and doctors fought daily to help him improve as well. In just a week, he’d become so adored by everyone who got to watch over him. Over the coming days, he improved enough to come off the ECMO machine, and successfully was removed from it. Everything was looking well to close his chest, amid fears of leaving it open too long opened up a risk for a myriad of infections, they closed his chest, in his room the Monday following his birth, how so much had happened in 7 days alone was insane to comprehend. He didn’t tolerate his chest closure well and a few hours after closing it, he suffered another cardiac arrest, another round of CPR, a re-opened chest, and back on ECMO. It felt like we kept taking 2 steps forward, and 8 steps back. Two days later he went in for a second open heart surgery to assess if there were any internal issues they’d missed, or additional fixes they could put in place to assist with his recovery, and next chest closure. They kept him on ECMO throughout and after the surgery in an attempt to assist with his recovery. Throughout all this, our little Azalea was adapting to the change and uproot of her life just beautifully. We were nothing short of proud of the way she had handled such a big experience in such a grown up way for a mere 2 year old, she adored her baby brother and was so incredibly gentle with him when visiting, bringing joy and sunshine to our darkest days.
Cautiously optimistic was our only way of being. Terrified of the next chest closure, but cautiously optimistic that the second surgery had rectified the issue. Two open heart surgeries in two weeks, two cardiac arrests, and now three turns on ECMO our boy had been through it and our odds were looking less favourable each set-back.
He remained sedated and on ECMO for some days, he was pale, ashen, and kept very still, he had a myriad of medical interventions including blood pressure medications, PD tubes, and additional pain relief and sedation. He was removed from the ECMO machine, again and handled this well. The team worked out he likes to work at his own pace, don’t push him he’ll do it when he feels good and ready. Baby braveheart came good a few days later, we got a very alert and the most awake we’d seen little boy which was so heartwarming for us after such a rough time to date. Heartbreaking at the same time as the tubes running through his nose, and throat ran through his vocal chords, watching your baby silent cry is one of the most gut wrenching things, the sound of his cry we were blessed to hear when he was born was a sound we’d forever hold dear, and one we’d unfortunately, never hear again.
Vinnie’s chest was closed again, and yet again, just after we had left the hospital he had another arrest and ended up on ECMO yet again. Our cautious optimism was quickly dimming. Everyone, including the medical team had no idea why or what was causing this to happen each time. This round, was considered our final chance to help our boy as they’d already used the ECMO machine more times than they generally would. We strongly believe, because of the attachment to our boy he was given much more attention, and consideration to extending his life than perhaps others might have received in similar situations. Now we were facing our final chance, and the possibility that after 3 cardiac arrests, our boy had almost definitely suffered some form of brain damage or potential lifelong disability from these episodes. How unfair for a boy so young, so small to have to deal with all of this in such a short lifespan.
Vinnie experienced yet another surgery to relocate the shunt previously placed, as they thought it was putting too much pressure on his heart when they closed his chest. The surgery was a success and came back out on ECMO to rest. We were hopeful, but not delusional. Everything that could have gone wrong for our boy, did. Unfortunately, he did not improve, his little body had endured more than it could handle and his brain function was severely diminished. On February 29th the doctors and nurses told us what we didn’t want to hear, the chances of his survival were next to none, and even if he did survive he’d require constant medical intervention, and would be severely disabled. We were faced with the awful decision, to remove him from the ECMO machine, and medical treatment keeping him alive and let him go.
We had decided to wait until the following day, to enjoy some precious time with our baby. The hospital team were amazing and took imprints of our boys hands and feet, allowed us to finally hold our baby again, plaster casts for memories and arranged a photographer to come and take some photos for us the following day and so on March 1st 2024 less than a month after we were given our beautiful boy, we were afforded one beautiful morning surrounded by some of our closest friends and family taking some photos that we hold as such precious memories now. The room was filled with love and light as everyone enjoyed their time and passed their love to our boy. Then, my husband and I remained in the room, holding and loving our boy as he took his last breath in our arms, surrounded by our love and coated in our tears at 1:11pm. You may not believe in angel numbers, but our boy showed us many of them through his short time from his birth weight to his time of death, a small comfort that I find showing up in our daily life and reminds me of him.
The most difficult part of this entire experience, aside from the loss of our baby was being torn between staying at the hospital with our boy 24 hours a day, or leaving to see and be with our gorgeous daughter who was so understanding and empathetic towards us for a mere two year old at the time, her strength, resilience and understanding of her parents coming and going at all times, showed us something years beyond her means and we will forever be proud of how strong she was through the entire experience. For us, it was not even a month but somehow felt like a lifetime.
In July 2024, we discovered we were pregnant with our rainbow baby, an unexpected joy throughout the grief we were still navigating our way through. A mere 4 months after saying goodbye to our boy, we were preparing to welcome another baby. We were excited and overjoyed of course but terrified all the same. What if we had a similar situation? We knew the chances of the same condition presenting was rare but not zero, what if something else was a problem this time? We couldn’t physically or emotionally go through something so devastating again, we wouldn’t survive it.
We had a nervous wait for our first anatomy scan. Fortunately, our baby was growing perfectly well and no defects were present. Another fairly textbook pregnancy yet again, although some more nerves than previously and on March 14th 2025 we welcomed our third child, and our second daughter Allora. I have no doubt our Vinnie sent this baby to us, to help heal us through our loss of him, not with a replacement of him but an extension of his love and our love a beautiful baby girl, a gift from him that we didn’t even know we needed.
Will we go for baby number 4? We don’t know yet, it’s a discussion for our family in the future. We’ve been through so much in the past 3 years alone it’s difficult to say what we’ll want in the next year or two. We have good days, and bad. Some days the tears and grief and heaviness hit us like it only just happened, and other days we are happy, living fearlessly for ourselves and our boy. Regardless, if we do or don’t have another baby in the future – we know we’ve got an angel watching over us, protecting and loving us all forever now.
The admiration and compassion I have for parents who have lost children has taken on a different understanding for me now. It’s something that can’t really, be fully understood or felt unless experienced personally. It takes a special kind of strength and love to show up each day for yourself, for your partner and for your family. Continuing along in life like you know you need to, to survive while your entire body is screaming at you in heartache and grief, and you feel like you’re drowning in it. Your entire world has crashed around you, and everyone else’s is still continuing on like nothing has happened. That’s the thing about child loss; it’s a label no one wants to have but those that do have a special understanding of it. The grief is a process that can’t be seen by the outside world, or understood by those who haven’t had the misfortune of experiencing it firsthand. It’s a different type of loss, of hurt and many don’t know how to navigate that with you, let alone while you’re trying to navigate it yourself.
It’s not lost on me, how fortunate we are to have our two beautiful, happy, healthy daughters here with us and we love them more than anything, they are our whole world and we see Vinnie in both of them each day. We are also blessed to live where we do, with such a great healthcare system and world class medical professionals ready, willing and able to fight for our boy. However, it doesn’t mean that we don’t miss our boy terribly and wish things could have been different. Or that the heartache and grief of losing him is any less. We will always wonder what life would have or could have been like if he were still here with us, if he hadn’t had this condition.
Now we do our best to share our story, Vinnie’s story. To show that it’s okay to be hopeful, to be positive, to want the best outcome more than anything in this world, and that sometimes despite all this, it doesn’t quite go the way you hope. Why we had to go through this, we’ll never understand, but it’s more than important to us to keep his name alive, to celebrate and love him in our family and make sure his sisters know exactly who, and how strong he was. We remember, honour and include our Vinnie in our daily lives, and we love him more than anything too. Our girls will grow up knowing all about their brother and we are proud to talk about him and our story.
We know we’re not the first, and we won’t be the last to experience this traumatic and life changing type of loss. Our story, and our journey is just one in a myriad of millions who have experienced some form of child-loss. Our hearts and love go out to all parents who have lost a child at any stage in their lives. It’s a club I wish no one had to join and it’s the reason that it’s so important to speak, speak up and speak our babies names and tell their stories. Us Mummas, and dads need to keep going, fighting, surviving and living, for all our babies who can’t – we see you and we are alongside you.
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