A moment that changed me: ‘I was told my baby wouldn’t live beyond 10 years’

I had a perfect pregnancy and everything seemed fine with our son Sam – we named him when I was five months pregnant – until the 36th week. At a routine antenatal appointment, his heart rate became very low for a couple of seconds. We were worried and so my partner, Matze, and I went to the hospital. It was at the height of the pandemic, and Matze had to wait outside for a couple of hours. At an ultrasound scan by specialists, they found something in Sam’s brain – one of the ventricles, the cavities in the brain, was 0.2mm bigger than it should be, but I was told it probably wasn’t an issue.

Sam was in an upside down position so I had a caesarean section planned for the 39th week. He came out looking and sounding like a healthy baby – breathing, screaming, and he fed easily – but because of the enlarged ventricle, they did an ultrasound of Sam’s head. It showed some abnormalities, but they didn’t exactly know the extent of the problem, so they scheduled an MRI scan for when he was seven days old.

Afterwards, the consultant brought us to a silent, dark room, the curtains half-closed, and sat us down. She said: “Your child has lissencephaly and he won’t live to be older than 10.” That week, I had been telling myself it wouldn’t matter if Sam was disabled or developmentally delayed, because he was perfect as he was. But the idea that he would die, that he would not get to be old, was devastating. We later discovered that lissencephaly is a rare genetic disorder, in which the outer part of the brain is not properly developed. The word means “smooth brain”, and this is what the brain looks like – like a hazelnut, rather than a walnut – missing its normal grooves and folds.

In that moment, we said goodbye to all the ideas and plans we had for our future, and what we thought bringing up a child would be like. I said goodbye to my career – I had been a journalist and I was starting to get a foot in academia; I had planned to do a PhD. But it meant nothing compared to the big goodbye awaiting us at some point in the future.

I don’t remember much more of that meeting, but it lasted less than 10 minutes and then we were sent home. At the time, we couldn’t take it in, but our friends and family were a big support. The first six months were the hardest. How can you hope to get accustomed to the idea that your child will die and there is nothing you can do? My life crumbled. We had hospital appointments to deal with, and when Sam was five months old, he started having seizures, now controlled, thankfully, with medication.

Sam is now one and a half and we are living our lives. It is painful to see him suffering – the side-effects of the medication, appointments, the blood they have to draw from him. But although he is delayed in his development, he’s doing far better than we were told to expect. We thought Sam would probably be unable to eat, to laugh, to show emotions, but he can do it all. He interacts with people and is curious about his environment. He probably won’t be able to speak, but he is making normal baby sounds – and specific sounds for specific things – so it’s his version of speech. He started nursery a week ago, with caregivers who are delighted to have him there, which means I can start making a return to work.

When Sam was six weeks old, and we were still reeling from the news, we visited good friends of ours. They had lost three children, and generously offered support and advice on how to cope with something so life-shattering. I had always admired them; now in their mid-70s and still working in humanitarian aid. It helped to see people who had survived losing children and still had a purpose, who were not devastated by it or bitter. Because I didn’t want to become that. They told us that life is a journey – some journeys are short, others are long, but nonetheless it’s a journey. This helped me to go some way in accepting that this is Sam’s journey and it’s just shorter than mine and his dad’s.

Having Sam has made me live in the moment, appreciate the people I love and made me rethink what a “good life” is. I was so incredibly sad for Sam that he would not enjoy the life I’ve had. That he could not enjoy running around and feeling how strong he was, he wasn’t going to be a teenager, doing all the stupid stuff, and he would not go on and explore the world. But I have to ask myself: is he happy? And he is. Being loved, being happy is what makes life worth living.

In every moment since the day we were told the news, I have loved him so much, but also known that I will lose him. This balance of love and loss coexists for me, but it has changed over time. I still know that his life will be short but right now, that is why I enjoy the time I have with him much more. If I tried to avoid the sadness, I think I would get stuck with no emotion at all, so I have to allow myself to feel everything.

One day, Sam won’t be here and I hope I will find a way to live with it. I am preparing myself now because I believe that the more we enjoy together, somehow the easier it will be, because it will not feel like lost time. So we travel a lot with Sam, we try to be in nature as much as possible because he loves being outside and he loves the wind in the trees, especially. We dance, we listen to a lot of music. We enjoy good food – his father is a chef, and Sam loves food. We cuddle a lot. He was a really easy-going baby, and he is still really sweet, so it’s easy to enjoy time with him. Sam is loved by us devastated parents and a huge extended family and friends. He is as perfect as can be.

As told to Emine Saner

• For more information about lissencephaly, go to the Child Neurology Foundation

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