Austin’s story

During our second pregnancy, we went for a private gender scan at 16 weeks, expecting a joyful milestone. Instead, the sonographer gently told us that our baby boy had excess fluid in the ventricles of his brain, right on the border of what could be harmful, and advised us to contact our midwives urgently. The ‘normal amounts’ should be anything below 9mm, and we were measuring at 10mm at this point.

It was a bank holiday weekend, so everything was closed. We were left with Google, fear, and our own thoughts, imagining the worst for our son’s future. The following week, we were referred to fetal medicine for an in-depth scan. By then, the fluid had increased and was classed as moderate. We were taken into the counselling room, which told us everything before a word was said. The doctors explained they couldn’t give a full prognosis until after 18 weeks, when more of the brain structure would be visible. Right now, the ventricles were 10.7mm and 11mm, already grown since just a few days before.

Two weeks later, we returned to the same team. This time, the diagnosis was severe ventriculomegaly. The measurements were now 16.5mm and 15.5mm. The outlook was very poor. We were given three options: termination of pregnancy for medical reasons, a neurosurgical opinion, or continuing the pregnancy, knowing our son would have profound disabilities.

We had a family holiday booked and, with encouragement, we decided to go. We made memories together, knowing one day we would treasure them. When we returned, we met with the neurosurgeon, who told us there was nothing that could be done. The fluid had caused devastating damage to our son’s brain. It hadn’t formed properly, and the pressure of the fluid was pushing it down into his spine. He explained that our son would likely have no awareness of the world and would require full-time care, confined to a bed. This was no life for him, and we were utterly devastated.

At 21 weeks, we made the heartbreaking decision to terminate. It was the hardest decision we have ever made, but one made entirely out of love for our son.

His birth was beautiful. Meeting Austin was perfect. He was born alive, and we watched his chest rise and fall for 45–50 minutes before he passed. We cherished every second. Knowing he would die didn’t stop us from hoping for just one more breath, one more moment. It was pure love and pure heartbreak, all at once. 

Austin being born alive meant we could register his birth. This was something we really valued from this experience, as now he is on our records forever. We brought him home with us thanks to the magnificent invention of a Cold Cot. This meant his little body’s natural decline would be slow, so we could have extra time with him before a funeral. Just me and his Daddy had the funeral after a week of loving him at home, very much in denial. We took such great care of him, just as we should and don’t regret a thing.

We talk about Austin every day. We love him just the same. We know this decision was right for him because allowing him to live a life without awareness, in pain, felt far more cruel. This was the most loving thing we could do as his parents.

If you are reading this and walking a similar path, you are not alone. During my desperation throughout these five weeks, trying to find other stories with similar measurements of fluid was important to me, which is why I have included them in this story, so you can try to see the facts we were given to help us with our decision.

I also struggled with the shame and guilt of having a termination until I found ARC. This website and these stories are why I now feel passionate about making other parents feel like they are not monsters, that this happens all the time, but the secrecy is what made me feel shame, so I tell everyone about it, to try and break the silence.

You are still your baby’s mummy and daddy, and he or she will never leave you. 

Love you always, Austin. This is for you. x