I write this on the eve of my son’s seventh birthday and I feel a mix of emotions.

Thomas is profoundly disabled. He has no mobility and his understanding is very limited. Developmentally he’s around three months old in all aspects and will not advance much further. He’s classed as life limited but does not have a specific prognosis. He is however, the happiest little boy in the world. He is constantly smiling and laughing. He brings us so much joy.

Birthdays are hard, however. He has no idea it’s his birthday. He doesn’t register he has presents or cards etc, and he is tube fed so he doesn’t eat cake (a little mashed up with custard maybe but that’s it). The celebrations mean nothing to him and they’re a constant reminder to me of how he is different. Also, after his birthday there are the anniversaries of all the events that came after his birth, and it stings. 

I also know that for the following three weeks or so I’ll feel emotional, remembering what happened seven years before.

My pregnancy and his birth were quite unremarkable, save that Thomas arrived on his due date, for which there is a 5% chance. After his arrival I felt my family was complete, he being a brother to our two and a half year old daughter. Nothing prepared me for what was to come next.

I expected to go home the day after Thomas was born. He was born at 8:30pm. Instead he was taken to the neonatal unit due to a rash, which blood tests showed came from an infection. He was placed in an incubator and was attached to wires and monitors. I don’t remember when, but at some point he was put on oxygen. Later that day a consultant came to see him and remarked his head was small, which could indicate that his brain was not developed. 

Thomas spent a total of three weeks in hospital. His infection cleared up in a week or so but his oxygen saturation levels were up and down so he didn’t come off oxygen for two weeks. When it was concluded he was fine, his levels were fine. In the meantime he’d undergone various attempts at an MRI, eventually having one successfully at 10 days old. The following day, we were given the results. It was confirmed Thomas’ brain had failed to grow properly. At that time we were told it was so severe he’d only live a few months.

My world fell apart. I cannot begin to describe the pain I felt for those next five days.

We ended up seeing a neurologist as Thomas was rushed to the specialist children’s hospital at 16 days old. We’d actually been making plans to get him home for the end of the week, as he’d come off oxygen. Although we expected to take a medically fragile baby home, whom we could lose at any time.

Thomas had other ideas however. He’d vomited all night and it was found his bowels were twisted. He had an emergency operation that night after we’d signed the consent forms, all the risks being outlined. Just before he went in to theatre we saw the neurologist, who’d seen Thomas’ MRI scan. He explained that things were not as severe as we’d been told. Thomas had microcephaly and polymicrogyria. He explained he could have some learning disability or be severely disabled but that he was not at immediate risk of dying. 

Thankfully, Thomas recovered well from his operation and he came home five days later but we had no idea what to expect for him.

I absolutely adore Thomas and having him has enriched my life so much. His birthday is special, as with any child, as it marks the day he arrived. But it is also tinged with sadness, I feel we go through the motions and it’s lost on him. To him, it’s just like any other day.