· By Tiny Hearts Education
Meeting Olivia + Thomas
Part 1: Losing our son.
I am not usually this open about my feelings or my personal life. But I felt the need to share my story and reach out to other mums or families that have experienced loss - know that you are not alone and that it's ok to talk about it. I hope my story will help others understand the significance of pregnancy loss and think again before asking, "Are you trying again for a boy?" Or "Are you trying again for a girl?" At the end of the day, having a healthy baby in your arms is the greatest blessing, no matter what gender.
This story also helps Dan and myself look back on our tough journey and remember how strong our little boy is - a true fighter, just like his Dad.
From the moment you find out that you're pregnant, a strong bond begins to form between mother, father and baby. You start to imagine what gender you will have, what name you will choose for them, what their personality will be like, what their future will behold and how wonderful life will be when they arrive.
A few weeks into the pregnancy, we found out the amazing news that we would be having twins. We felt so lucky to have two little bundles of joy that would soon come into our family's life when many families can find it extremely difficult to have even one. Later on down the track, our Harmony test told us that we would have babies with no genetic disorders and have either one boy or two boys. On that day, we had also finally moved past the 'safe' mark at 12 weeks [along with a scan], making us feel so incredibly confident in the pregnancy.
Full of confidence and excitement, we started to prepare Isabelle for becoming a big sister. At around 16 weeks, a scan told us that our twins are fraternal [two separate eggs] and that we would be having a handsome baby boy and a beautiful baby girl. We also started to feel little kicks around this time and held our hands lovingly on my tummy, eager to feel their little movements.
Everything seemed perfect.
Until our 21 week scan - our perfect world came crashing down. My heart dropped as soon as the sonographer said, "Hmmm", followed by "I haven't seen this before, I'll go and get one of the doctors to have a look as well". Amidst the high numbers during Covid and still, to this day, partners aren't allowed to come into the scan room even when receiving bad news. I'd never felt so alone, waiting patiently for the doctor to try to make sense of the scan and to come into the room to tell me the bad news.
They explained that they had found a mass on the heart, which is larger than the heart itself and are hoping that it is a cystic mass and not a tumour. The news was shattering, but a huge part of us hoped that it was cystic and would eventually disappear as our little boy grew over the coming weeks.
Alone [due to covid], I attended countless appointments while their great minds observed our son and came up with a diagnosis. Our son was diagnosed with a large cardiac tumour that was causing the right atrium of the heart, not to pump properly. It was unknown whether the cardiac tumour was benign or malignant. To think that such a young and innocent life can so unfairly get a heart tumour is beyond devastating. Why him? Why us?
Soon after the diagnosis, we met the Head of Unit, a brilliant man who was going to try and save our son. He expressed that our baby is very famous at Monash and has been diagnosed with a medical condition which is the rarest of rare, that even the most experienced doctors haven't seen before.
As the weeks slowly went by, his condition started to become more and more severe. The tumour caused a pericardial infusion around the heart [a build-up of fluid around the heart and tumour - a sign of heart failure]. Our son now had a mass like a basketball in his chest that was now causing an effect on his lungs, trachea and esophagus. A few more weeks went by, and his condition worsened to him being in 'Hydrops', where large amounts of fluid build up around the skull, inside the baby's tissues and organs, causing extreme swelling.
He was now experiencing extreme heart failure and was expected to pass away any day now. Dan and I still wanted to save him as there was still a little hope. If we removed the pericardial infusion around the heart, the hydrops could disperse and leave enough room for his other organs to develop further. Knowing that his heart was still miraculously pumping away strongly and that he still had enough blood reaching the brain and the rest of his body, we went into fight mode. If our son is fighting so hard for his life, we can't give up; we need to fight with him.
Dan and I were told we could have a pericardiocentesis procedure to remove the pericardial infusion around the heart and tumour, hoping to give him more time and have the hydrops disperse. But there were risks, as the procedure involves large needles going through myself and our son. I could go into labour and have the babies soon after, or one of the needles could go straight through his heart, ending his life right then and there.
Understanding the risks, we booked the procedure for when I was 28 weeks as we knew our daughter had a high survival rate then, and we would have a chance to save our son without giving up on him completely. The procedure was one of the most nerve-racking experiences of my life, as I needed to stay awake without anything keeping me still, only a numbing cream over my stomach. I had to stay completely still for a full hour, knowing that I could kill our son if I moved slightly.
The next day we found out that the procedure was successful, and suddenly we were filled with hope for our son. However, the doctors were very upfront by reminding us that this was not a cure - the pericardial infusion would still form around the heart again due to the size of the heart tumour.
Two very hopeful weeks passed by. Then at about 30 weeks, I went into early labour - our son was found to be distressed, and we were raced to the birth suite. We were asked if we wanted to save our son, of which we said yes. We thought in only a matter of minutes we may be meeting our son and daughter for the first time, but we knew it would not be a good outcome for our son as it was too soon for him. Thankfully the wonderful nurses and doctors at Monash prevented further labour, and our son was no longer distressed.
I spent a week in hospital, thinking that I would stay there until their birth, but towards the end of my stay, we found out some terrible news that would change our lives as we knew it. Our son's pericardial infusion and hydrops were back and worse than ever. The tumour had also grown; the heart was now made up of 70% tumour and 30% heart.
Dan and I were asked to join a meeting with six senior specialists, which included: the head of the unit, two senior specialists from his team, a cardiac surgeon from the Royal Melbourne children's hospital, a pediatric cardiologist and a specialist from the special care nursery. Full of hope that we had made it to a good gestation for twins, we thought the meeting was to talk about saving our son and discussing what excellent care our twins will be in.
Sadly, we were wrong; they told us that our son is too sick to have open-heart surgery to remove the tumour. No matter how old he is or how big he gets, he is far too sick, and there will only be one outcome. The only way to save his life is to remove the tumour, so without surgery, that is no longer possible. He will now slowly start to deteriorate, and even if we were able to try to save him a few more weeks into the pregnancy, he would not have a good quality of life, and that would not be fair to him. We left the room with no hope.
This pregnancy and this year had already been very tough on our family. Our dog passed away. I witnessed my best friend go through a rare cancer with vigorous chemo treatments. At the peak of Covid, I was placed in a Covid ward for a week [all whilst pregnant without even having COVID], waiting on a diagnosis of duodenal ulcers. Yet, our journey is going to continue to get more tough. One day soon, I won't feel any more movements from our little boy. I will then need to carry our dead son and our healthy daughter until she is full-term (at around 37 weeks). Then at birth, we will be meeting our twins for the first time. We will be full of joy to meet our lovely daughter for the first time. Yet full of sorrow when we meet our angel baby for the first time. We will be able to cuddle them each dearly, but it will be hard to let our son go and never cuddle him again. Although it will be deeply devastating, we are one of the lucky ones that will get to take a healthy baby girl home, and Isabelle will still get to be a big sister. We will never forget our son; he will always be in our hearts and will forever be so loved.
Thomas defied all odds as he was able to survive to 35 weeks in utero when it was originally thought that he would only survive up until 25 weeks. Even days before the twins birth, we were advised that Thomas most likely wouldn't survive the birth itself, and if he did manage to survive, he would not survive transport or surgery.
However, our son amazed everyone and managed to survive many difficult hurdles; a pericardiocentesis, birth, being stable for transport to the Royal Children's Hospital, transport with the PIPER team, cardiac surgery to remove the whole large cardiac tumour and the critical recovery days.
The teams at Monash Hospital Clayton and the Royal Children's Hospital helped save our son even when the odds were not in his favour; we will forever be so grateful to them for saving Thomas's life.
We also like to think that Olivia was by his side, helping him every step of the way and continuously nudging Thomas by giving him comfort that everything will be ok. Of course, Isabelle's loving kisses on my tummy each night, showing her love for the twins, would have helped too.
Olivia and I have just returned home from the hospital last night and are now on the mend. Thomas has recently been transported from the Royal Children's Hospital Melbourne to Monash Children's Hospital ICU. He has a long couple of months of recovery in front of him, but tests and scans have told us that he will live a quality life. ❤️❤️❤️
We feel so incredibly lucky and grateful to have Thomas still apart of our lives. I feel so deeply devastated for the families that aren't as lucky as us, more than I ever have before, as I was told to grieve our son through most of my pregnancy.
Our story sends the message to never ignore your instincts, to never be scared to talk about any hardship that you may be facing, and to never give up on what you believe in.