Little boy’s gift to a stranger
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 when he was 311 days old.
His dying and the circumstances that led to it came as a complete shock to us, and 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. We have since learned that only two other babies in the world have had his form and mutation of epilepsy diagnosed in the past five years. They too died early.
Sebby didn't lead a life of sickness - 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 now living with this pain, we cannot agree more.
Sebby's brain died before the rest of his body did. While 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 suitable matches. We had hoped that more could be taken from him, but his condition and age added some limitations.
While 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 recipient's family. Seb's gift gave hope where ours had been lost.
We think often of that phone call, to a person who had been living their life on dialysis. The Seb changed that person's life. This brings us so much pride.
On the night before Sebby died, we gave him a beautiful send-off. His friends and family surrounded him and said goodbye. He got hundreds of kisses and so much love whispered in his tiny 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, we walked him into surgery. The row of doctors and nurses were scrubbed up and solemn as we said the 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 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 - 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 the hospital who aided 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, someone else is healthy again, offered a second chance to live because of The Seb.
We walked away from the hospital empty handed yet hand-in-hand, our hearts heavy with an
unbearable pain, but also 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.
Organ and tissue donation is the ultimate gift. We know hundreds of people at Sebby's funeral registered their donation decisions at donatelife.gov.au and we'd urge you to do the same.
On DonateLife Thank You Day this Sunday, we will honour our Sebby, and raise a toast to the young person who has helped a part of Sebby live on. We will feel connected always to an unknown family that was changed as much as ours, by one special little boy.