Our son, a lifesaver
Our ten-month-old son, Sebastian, The Seb, or Sebby to those who knew him, gained a magnetic command of a room anywhere he ventured. He was chubby, robust and completely loveable.
He died on July 31. He was 311 days old.
His death and the circumstances that led to it came as a complete shock not just to us, but to the whole medical community that he was known to in his short life. He had an extremely rare and dangerous epilepsy, which with such little research, offered no prior warning that death was ever a possible outcome. After his death, we learned that only two other babies in the world have had his form and mutation of epilepsy diagnosed in the past 5 years. They too died early.
Sebby didn’t live a sick life, his life was full and he was thriving. When he was diagnosed at six months, he was controlled with medication. He only suffered four significant seizures in his short life. Our worst fears were realised when his fourth seizure, the last, proved fatal.
We have suffered the ultimate heartbreak. They say no parent should have to endure the loss of a child and living this pain, we cannot agree more.
Sebby’s brain died before the rest of his body did. Whilst this sounds like the worst news for any parent to hear, it set off the rare occurrence of stars aligning for organ donation.
When we were told, we absorbed the shock as best we could, and immediately asked if Sebby was able to share his organs. The next 24 hours was a flurry of extremely skilled professionals investigating what could be removed from Sebby and finding perfect matches. We had hoped that more could be taken from him, but his condition and age added some limitations.
His ‘super kidneys’ though, were thriving and healthy. A recent medical advance has allowed the kidneys of a baby to be fused together to replace a single adolescent or adult kidney. In due time, we are told, this kidney will be stronger than that of any other adult.
Whilst we battled the immense pain of being told our baby had died, we took solace in knowing the pain we felt that day would have been proportionate to another family’s happiness. Our rivers of sad tears, matched with tears of joy from the recipients family.
Seb’s gift gave hope where ours had been lost. We think often of that phone call, to a young man who had been on dialysis for three years. That phone call changed his life. Our Seb changed his life. This brings us so much pride.
On the night before Sebby died, we gave him a beautiful send-off. His friends and family all said goodbye, he got hundreds of kisses and so much love whispered in his small ears.
The Seb was tied up to more tubes than any baby should ever suffer in a lifetime, but we were able to sleep by his side and hold his hand through the night, special memories we will hold forever.
On the day of his organ donation and death, July 31, we walked him into surgery. The row of doctors and nurses were scrubbed up and solemn as we said our last, hellish goodbye to our beautiful boy.
We walked to a park near the hospital and sat in the afternoon sun. We saw a helicopter arrive onto the roof of the hospital in those hours and like to think that we saw our baby’s life fly away into the sunset, flying hope toward another family.
For a few hours that night we got our boy back. Lifeless but never more angelic. A sleeping beauty, with an impressive scar running from sternum to waist, a slim line of bright red blood indicating where the life had left him to be given to another.
We are grateful to no end for, our Rockstars, the exceptional staff at Sydney Children’s Hospital who were able to aid this gift of life. Sebby had a phenomenal team around him in his final days, no stone was left unturned to fight his death. But once his end was imminent, a whole new machine kicked into gear to facilitate the ultimate gift of organ donation.
This gift has lessened our emptiness to a degree. We know that somewhere, a young man is healthy again, offered a second chance to live because of The Seb.
As we walked away from the hospital empty handed yet hand-in-hand, our hearts were heavy with unbearable pain, but also filled with a pride so great. Our little man died a hero and we feel so lucky that he was able to offer the gift of life, and that we can share his story.
THE GIFT OF LIFE
It is an unlikely occurrence that organ donation is ever even possible. Not only do patients have to be well enough to donate, but a whole series of stars need to align before the operations can take place.
In 2017, of the 160,909 Australians that passed away only 510 organ donations from deceased patients were facilitated.
We have shared our donation story far and wide with our family and friends, and we know that the hundreds of people at Sebby's funeral officially registered at donatelife.gov.au and urge you to do the same.
But the most important piece of the puzzle is to make these wishes known to your friends and family. If there is conflict or confusion about a dying person’s wishes, the final decisions will lie with whoever is in the room at the time. Imagining these decisions can seem terrifying but, in the extraordinary occurrence when things fall apart if this open conversation has already occurred, the stress is lessened.
This Thank You Day, we will honour our Sebby, and raise a toast to the young man who has helped a part of him live on. Whilst the Australian laws do not allow us to meet, we will feel connected always to a family that was changed as much as ours, by one special little boy.