The day that changed our lives


How I received the diagnosis of my son’s cerebral palsy from a most unusual source

Jacob fought his way into the world at just 32 weeks gestation. My waters broke unexpectedly and after three days of experts trying to delay the birth, my baby went into distress and we were rushed into theatre for an emergency caesarean. Following three weeks in special care, we left hospital with no idea that anything was wrong. I was a young first time mother and I suppose I did not want to let my mind wander towards any possibility of there being a problem.

After almost a year of questioning Jacob’s delayed development, I finally had a health visitor who spent just five minutes with him before saying he needed referring to a paediatric consultant.

My memory of what happened next is slightly blurred now, but there were numerous appointments in very quick succession. The professionals would make “hmmmm” noises and scribble down notes, then leave the room without saying much at all.

By chance, I happened to see a TV programme in which two families discussed their child’s cerebral palsy and the signs that alerted them to the condition. I quickly found myself thinking: Jacob does that, and that, and that. Deep down, I knew the truth and it felt like my heart had broken in two. However, my head kept telling me that no one had actually made a diagnosis and that gave me hope.

I had read stories written by parents about their “diagnosis day” and how they knew they were going to the appointment that would change their lives forever. Now, I was waiting for my appointment for our “big day”.

That letter never came, though – well not through the post. In reality, our diagnosis day came as a bit of shock and the news we expected came not from any of the specialists or experts we had been to see, but from a regular, run-of-the-mill check up by a health visitor. As I sat opposite her, she left her binder of information open with the tell-tale letter on top. It was headed:

“Re: Jacob – Confirmed Diagnosis : Quadriplegic Cerebral Palsy (affecting all four limbs and torso) and Myoclonic Jerks (frequent)”.

There it was in black and white. It felt like someone had punched me in the stomach. I guess she sensed something was wrong when I managed to finally stutter: “so, is that my baby’s diagnosis then?”

She went through the obligatory minute of profuse apologies. Of course, she assumed that we had been informed by the same letter that she had, the one I too had expected to receive. The long and short of it was, though, that it was not her fault; our letter had never arrived and now I knew.

After she left, I remember watching Jacob for a long time as he slept. He looked so perfect. He was – and still is – so perfect. The tears didn’t come then – where do you even start to process this kind of information? But that day, a new era dawned for us. I knew that somewhere along the line I would have to tell everyone I knew that my baby had cerebral palsy and that we would all have to prepare for our new lives. The words were tumbling around in my head and I didn’t know where to turn. Then Jacob woke and we returned to our familiar mummy and baby routine, with me feeding him, changing him, bathing him, playing with him, singing to him, cuddling him and loving him – all the things we did before we knew.

Further information

Lynsey Summers blogs about her sons Jacob and Jett at:

Lynsey Summers
Author: Lynsey Summers

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