'Finding out I was donor conceived was a shock. Then I learnt how my biological father died.'

When I saw the missed call from the counsellor flash on my screen, I knew my biological father was probably dead.

I felt my heart lurch into my throat as I walked out of work, sat on a picnic table, wiped my sweaty hands on my jeans and returned the call.

"I'll say it quickly — it's not the news we hoped for. We believe he passed away between 10-15 years ago."

Images of meeting the donor in an office at the Victorian Assisted Reproductive Treatment Authority (VARTA) headquarters evaporated.

I'd imagined seeing a man who wore my face enter the room; imagined the stilted conversation and awkward jokes. I'd imagined staring at an office pot plant, placed there to liven up the room, instead of making eye contact.

However, I had also imagined the closure that would come of knowing where I came from and who I am, and ultimately getting to know my genetic risk factors. I'd imagined walking out of that room and one way or another, feeling a sense of peace, which has evaded me since I found out I was donor-conceived two months prior.

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Finding out you are donor-conceived is a mind-bending experience. Everything you took for granted about who you are is taken out, inspected, tarnished and either returned to your soul misshapen or discarded entirely.

Friends and family don't know what to say because they love both you and your parents, and they see both sides. But try as they might, they can't quite fully understand the magnitude of feeling that your identity has been ripped from your grasp, let alone the feeling of looking in the mirror and not recognising yourself anymore. Looking for evidence in the curve of your eyes or the sharpness of your cheekbones that you still belong. The crushing sense of disappointment when you come up short; when you are a stranger. 

The came the next blow: I found out that my donor had died young, and that I am now at risk of hereditary cancer.

You can probably guess at the trauma and grief I've been experiencing, as I try to come to terms with not only my identity being destroyed, but also my personal struggles and my distress at my donor's death.

The people that have been alongside me the whole way, though, are the counsellors at VARTA.

My case manager worked tirelessly to give me access to information about my donor and potential siblings. Meanwhile, my counsellor made me feel seen — she had walked others through this same pain and confusion before. During what was the most isolating experience of my life, she made me feel less alone.

I began navigating a service that, before June, I didn't know existed, and I started the confronting journey of discovering my donor and half-siblings. But just as I began to come to terms with my new reality, I was hit with another wave of shock: VARTA was closing in December. The one service that had truly been in my corner, listening and caring, was being dismantled.

A critical loss for donor-conceived people.

The Victorian government has proposed sweeping changes, merging multiple services under a new Health Regulator. Unfortunately, these changes will eliminate key support systems that donor-conceived individuals like me desperately need.

One of the most troubling changes is the removal of educational services for parents who use a donor to conceive. VARTA has long advocated for early and open disclosure to donor-conceived children, backed by substantial research.

A recent review involving 70,000 donor-conceived participants revealed that individuals who find out as adults that they are donor-conceived suffer significant psychological harm. Early disclosure was overwhelmingly preferred by donor-conceived people, yet the proposed new system will abandon this best practice.

When I was born, my parents were advised to keep my conception a secret — they were told it was for the best. Now we know better. Despite this, the government's proposed Bill (which is currently sitting in the Upper House) doesn't take this evidence into account, and risks psychological harm to children born in 2025 and beyond.

Without proper education, future parents may choose not to tell their children, thinking they are doing what is best while condemning the next generation to experience the same fractured sense of self that I have.

The government is also proposing to remove mediation offered by VARTA to help connect donors and their offspring for that first, raw meeting. Instead, they offer an online portal to connect donors, removing humanity from a very human experience.

This may reduce the likelihood of a donor feeling comfortable sharing their medical history with faceless people on the other side of the internet. We know this because in 2021, fewer than 1,000 people were on this portal, despite more than 30,000 being eligible for it.

Members of the donor-conceived community rely on the good graces of their donor to be a nice guy and share his history. We cannot access genetic testing and there is no legal obligation on the donor to share if he has a medical condition that could disable or kill his donor children. 

After uncovering this information, I held the potentially naive approach that if I just told the government that what was being proposed was so harmful they wouldn't do it. That if they heard from people about the damage, it would cause it surely wouldn't just pass through the government so easily.

I called everyone I thought I should — the health minister, my local MP and journalists. I made a petition, I spent hours giving people my flyers, telling every person I knew my story to just get one more signature.

I stopped eating and I stopped sleeping. I sent unhinged emails begging for meetings, and I started writing this opinion piece.

A step backward.

Next year, if the Bill is passed, new parents will receive the same non-existent education about early disclosure that my parents did. Next year, when a girl finds out she is donor-conceived in her late 20s and looks for help, she will be given an education pamphlet and some paperwork to fill out to join the donor-matching social media equivalent.

When the case manager finds out her donor is dead, they won't have the collaboration of an in-house counsellor to help break the news, or if he is alive and she wants to meet him. They will wish her all the best and tell her to meet in public for her safety.

In 2016, Narelle's Law passed in honour of Narelle Grech, who died of heriditable bowel cancer. Victoria became a world leader, allowing never-before-seen access to donors. The success of this policy would be tarnished by the removal all of the supports that made it great.

Maybe this Bill can be stopped if enough people join my voice. Maybe we can scream together.

To see the author's petition, click here.

Feature Image: Getty.