When Lynbrook mother Sashi Theobald put her son Michael to bed during the first six months of his life in 2018, she would walk away wondering whether he would be awake when she came to check on him the next morning.
“It’s insanity, but that was my situation, my reality at the time,” Ms Theobald said, reflecting on the period.
“It doesn’t feel real that one hour he was fine, the next he could be in a life threatening situation where could be sent to hospital.”
Michael was diagnosed with Ornithine Transcarbamylase (OTC) deficiency, a life-threatening condition that causes dangerous levels of ammonia to accumulate in the bloodstream and travel to the brain, resulting in symptoms such as vomiting, a refusal to eat and even a coma.
She estimated that in the first six months of his life, Michael would have spent 90 to 95 per cent of his time at the Royal Children’s Hospital, where she formed a close bond with fellow parents, and medical staff, whose compassion and care for her son in such a critical period was evident.
“His nurses in his ward would visit him and there was genuine concern,” Ms Theobald said
“The team there handled a volatile and insane situation so well.
“I could see a lot of them took it really personally, they said they would lose a lot of sleep. One consultant even said Michael caused them to go grey.”
He would go through ups and downs during his treatment, where the downs would necessitate a stint in the Intensive Care Unit (ICU) and what Ms Theobald would describe as a “developmental reset”, where he had to re-learn how to consume food and coordinate his body to complete tasks such as sitting upright.
In need of a liver transplant, Ms Theobald registered herself to be a donor for her son.
She had always harboured ambitions of being a donor but the pressing, critical nature of her son’s condition meant there was no time to waste.
As the donor, her recovery would have dictated her taking things easy, to the point of not being able to carry or hold her son.
But she was willing to make the sacrifice.
“I remember talking to the specialist during the process and telling them, ‘If I’m nervous or shaking, just ignore it. I really want to go through with it. I need my son’s life to keep going on.’
“I didn’t want to leave it to chance. I knew how serious Michael’s condition was.
“As soon as (Michael) was put on the list, I put my body down as a donor.”
At the final hour, literally days before going under the knife, a liver became available for Michael, and at seven months he received the critical surgery that would change his life forever.
Nearing his fourth birthday later this month, Michael is still suffering some lingering effects of the disease, requiring occupational and speech therapy. But for Ms Theobald and her family, it’s a world away from what could have been.
“This is normal, doable,” she said.
Ms Theobald is sharing her story to raise awareness of DonateLife Week, from 24 to 31 July.
Throughout July and August, DonateLife Victoria are encouraging up to 100,000 more Victorians to register as organ and tissue donors as part of the Great Registration Race.
Around 1750 Australians are on the waitlist for an organ transplant with a further 13,000 on dialysis.
1174 lives were saved as a result of an organ transplant in 2021, and while four in five Australians support organ donation, DonateLife says there are 13 million Australians eligible aged 16 and over who have not registered.
Ms Theobald is encouraging everyone to take the time to register to ensure that the decision is made before too late.
“Don’t leave it to chance,” she said.
“It’s so much easier than you think.
“You wouldn’t change one person’s life, you’d change everyone that person meets. There’s such a domino effect.”
Register to become an organ and tissue donor at donatelife.gov.au
