WE HAD TO TURN OFF OUR SON’S LIFE
This post discusses the death of a child. If this raises anything for you, please contact the Red Nose Peer Support hotline 24/7 on (Australia) 1300 308 307, or Lifeline on 13 11 14
We had been here before, this time felt no different. I woke that morning to my husband yelling at me to call an Ambulance. He had checked on our first-born son Sebby and found him seizing in his cot.
Within minutes, the Ambulance was here, we were whisked to Mona Vale hospital and, as usual, Seb was greeted by a legion of clinicians and the process of intubation, sedation and waiting began. It took around five hours, but after the Neonatal Support (NETS) angels arrived, he was stable enough to be moved to Sydney Children’s Hospital at Randwick.
That day was a Friday.
Patients who experience seizure can suffer severe brain damage, particularly in Seb’s rare case as this seizure lasted for at least 18 hours. The level of damage can only be properly assessed by MRI, and at that time, MRI tests were not performed on weekends within that hospital alliance.
We would later be grateful for this fact.
We had been here before. To Sydney Children’s Hospital. This was Seb’s fourth severe seizure. I had spent other occasions with him at Mona Vale, but this was the “good place” the “best place”. The place where sick children go. And the place where newly healthy children leave.
Sick children go to hospital to get better because sick children don’t die in hospital.
My child does not DIE in hospital.
Seb looked so peaceful and angelic in these few days. He was heavily sedated and had a multitude of tubes and machines keeping his system running. His limp hands and feet were so easy to caress where normally you’d have to catch him for a quick cuddle before he pushed you away.
We stayed by his side every moment. The concerned looks of nurses and doctors clearly washed over me as I was just waiting, as I had before, for him to wake up.
He did wake at one stage, very briefly, he sat up slightly, eyes alert and looked straight into my husband’s eyes. We didn’t know that was his goodbye.
By the Sunday it was dire, in hindsight. He needed help to breathe, his liver was failing and we discussed transplant options, but still I was waiting.
When you become a parent, without you knowing, all you do is wait.
For every breath when they are a newborn; every “muuuummm” in the morning when they are young and, I imagine, every late night click of the door when they become a teenager.
Waiting uses up a lot of unseen energy that parents need to give themselves more credit for.
This waiting was exhausting.
Seb had an MRI on Monday morning.
The afternoon was just like a film. His neurologist - whom we adored - the head of PICU, all their associates, and our ICU nurses came into the room. And closed the door.
My mother’s naivety was unwavering. I could feel my heart pounding, the blood rushing but I still made light. It was ok. I was just waiting. My Sebby was going to wake up and come back to me soon.
But he wasn’t.
His neurologist said the scan results were “catastrophic”. His brain had died sometime over the weekend.
Our baby’s brain was dead.
I remember screaming that “I didn’t know”. I didn’t know that the last time I saw his smile, was the last time. The last time I heard him gurgling, a farewell. His sparkling beautiful eyes, laughing with me, the finale. I held him in my arms on Thursday night and gave him his bottle. He played with my hair as he fell asleep. If only I could have had him back for one minute, to have been more present, to know it was our last.
I just didn’t know.
Grief is something I have experienced so wholly. My mother died when I was small, my father at 21 and the loss of my most beloved Mardi, my grandmother, still a deep wound - only five years prior to Seb.
This was my “why me” moment. How can I have a life so full but lose so much? It is just not fair.
Lady luck doesn’t play fair though.
They told us that they had called his time of death after seeing that scan. 12:12pm.
We were later told this time symbolises that of the Guardian Angels.
Seb is safe now, we believe that.
THE GREATEST GIFT
I do not know what it was in that moment, but I asked about Organ Donation. It was senseless to me for this world to lose a beautiful child without reason. That simple request set off a hurtling train of events to facilitation.
We were left alone to grieve with our baby. Sebby was still warm and looked so alive and so present.
I will never regret the three days of hope I held over that weekend, my “waiting” time. If we had been told that Seb had died on the Friday, our experience would have been incredibly different.
We used that afternoon to make the worst phone calls we have ever had to make. Our wonderful family facilitated a plethora of visitors.
To see Seb our friends had to walk through the halls that we were so familiar with, as any parent of an ICU child normalises the environment, and see the hundred tubes floating out of his body into various machines, his limp body warm but fading. They could touch and kiss him, but his smiles were gone. His chubby hugs no more.
I will never underestimate the trauma that ‘our people’ experienced that day, but I will be eternally grateful for their goodbyes to our baby boy.
That night we slept by his side. We were left in privacy except for the wonderful keepsake organisations that float in during these moments – his fingerprints taken, his hand and feet cast, the most beautiful photos taken by Heartfelt photography, a not-for-profit organisation who supports families in these situations.
What was to come was so unknown, the thought of leaving without him still unfathomable.
Tuesday 31 July 2018
During the excruciating hours of that night, the Organ Donation team had found a match for Seb’s kidneys.
Whilst we agonised in grief over our loss, another family prepared for this loss to save a life.
When the surgeons were ready for him, I remember my sisters-in-law were with us and were so stoic. All I wanted was for Seb to get as much love in his time here as he could, and they showered him with more tears and kisses.
Seb’s machines were all bundled up, his bed pushed slowly and carefully into the belly of the hospital. We walked silently.
And we had to say goodbye.
I do not remember what was racing through me, but I do remember the sounds of screaming [my own]. The surgeons and nurses were wonderful. I was begging the nurse to make sure she held his hand as he left this earth, to make sure he had his beloved lamb tucked tight up under his arm. It must have been torture for her to not give way to the energy of that moment.
The sounds were so loud, the pain so intense.
A mother losing her child.
That sound was my heart breaking.
We later learned that the surgery team held a guard of honour over his head as they wheeled him through to the operating theatre; one of the young doctors, a father himself, later taking personal leave to deal with the emotions of that day - It must never feel ok to lose a life in your own hands.
WE GOT HIM BACK
A few hours after the surgery, we walked back into the same room where we had spent the last four days. With the machines gone, a deafening silence roared.
Our Sebby was there, just lying on the bed.
But he was no longer with us. He was carefully dressed in a new outfit we had bought for him, washed so gently - not a remnant of any of the tubes that had wrapped his face and body for days. His tiny lips stained a dark blue, his flawless skin so soft as always, but now he was freezing cold.
He looked simply perfect.
We got to hold his limp body for as long as we wanted with no longer a need to be careful with his floppy limbs.
Our baby was dead.
No parent can comprehend this weight - the physical weight. Sometimes we feel it when we move a sleeping child from a car into the house. Or if they fall asleep in your arms before bed.
But this heaviness was indescribable. Literally dead weight.
I will never forget that exact weight, it is burned within my arms.
RAIN BRINGS RAINBOWS
Seb had a beautiful scar, running the full length of his torso. It was covered in a second skin dressing, but the blood was so red and raw. That sight was a defining moment for me, and one of the most special things I will remember about that day.
This scar meant death to me, to our baby, to our family. But to someone else, that scar meant life.
Whilst we were in the deepest and darkest moments of our life, another family was receiving a phone call that would change the trajectory of theirs. Seb’s kidneys were sewn together and transplanted into a young adult. Within hours, he had come off three years of dialysis and regained a life that had a promising future.
Organ Donation in Australia is very rare, in part due to the nature of our system, which requires residents to not only Opt-In but to ensure that their family members are aware of their wishes. Hundreds of thousands of healthy organs die each year without a chance to be offered to someone in need.
There are 13 million Australians who could be registered organ and tissue donors but aren’t.
We are passionate advocates for Organ Donation because Seb’s legacy is so strong. We are buoyed to know that a part of him thrives here, a tiny piece of him is the reason someone else is breathing.
The loss of a child makes no sense. There is no sentiment you can affix to the loss that alleviates any of its pain. But for us, knowing that he saved a life, is a small something that we hold onto.
Please visit DonateLife.gov.au to arm yourself with more information about organ donation, so that you can start an informed conversation with your friends and family.