My baby’s cerebral palsy diagnosis – Katy’s story

Lewis and trike

Katy had no reason to think anything would be wrong when she gave birth at 41 weeks, until her baby was born not breathing and suffering seizures.

At ten days overdue, I was admitted into hospital because of reduced movements though at first it wasn’t obvious that something was wrong. It wasn’t until I was pretty late into labour when I started to feel really unwell. Then a test showed my baby’s oxygen levels were very low and suddenly, doctors rushed into the room with a crash team and to speed things along, I had to have a forceps delivery.

Lewis was born the next morning, weighing 8lb 4oz. He didn’t move. He didn’t cry. He wasn’t even breathing. The doctors performed CPR on him and, after what felt like forever, he let out a tiny little cry. I was allowed to hold him quickly but then I had to go into surgery as I had suffered a third-degree tear and Lewis was taken to the NICU.

I hadn’t been on the postnatal ward long when I saw a doctor and a midwife talking and looking at me through the window. I knew something was wrong and my heart sank. They walked into the ward, shut the curtains around my bed and I will never forget what the doctor said next. “I’m sorry to tell you but your baby is very sick. We suspect he has significant brain damage. He is fitting and needs to be transferred to a specialist unit for cooling to reduce any further brain damage”. I asked him if Lewis would survive and he told me it was likely that he might not recover. My world fell apart. I just sobbed and sobbed.

Lewis incubator

When Lewis was stable, he was transferred to Burnley while I had to stay behind in Preston for a few more hours. I had an infection and was in lots of pain from the surgery, so I was admitted onto a ward while Lewis was sent to the NICU for cooling.

I couldn’t walk so my husband had to wheel me down to see him. He was in a medically induced coma with a big tube down his mouth and covered in wires. He was bigger than the tiny babies around him so his feet stretched to the bottom of the incubator.

Lots of tests, MRI scans and EEGs were to follow. Lewis had multiple infections and was still having fits. He had suffered a bleed on each side of his brain, and a scan showed a stroke-like shadow to the front of his brain. We were told again he may not recover so we should spend as much time as possible with him now.

My husband and I sat with Lewis every day. He felt cold as we held his hand through the incubator holes. His skin was so dry and red from the infections and the infusions which he kept needing. The silence in the unit was broken by the constant beeping of the monitors. We couldn’t hold him or feed him or dress him. But we were allowed to give him one teddy, a little white dog, that sat on his incubator every day. It was a little bit of normality for us. Making his first home feel homelier was the one thing we could do for him, and it was a comfort for us to do that when otherwise we felt useless.

Lewis and Doug

Despite the odds, Lewis fought back. He was gradually warmed up and when he was five days old, we were able to cuddle him for the first time. He could start having feeds and we could even dress him for the first time.

After just over a week, Lewis was transferred back to Preston NICU, and two weeks after that, we took him home. We were told beforehand that Lewis would be significantly disabled, that he may never walk or talk and that he may need help with daily tasks. This was terrifying - we were taking our baby home but his future was so uncertain.

Lewis and blanket

When Lewis was three months old, we moved to Germany with the British Army. He started falling behind with his development and, at 18 months old, he was diagnosed with cerebral palsy. My husband had been deployed to Afghanistan two months before, leaving just me, Lewis and our dog. I needed something to focus on so I decided to make it my goal to get Lewis walking.

After four months of teaching him to step, balance, cruise furniture (and using the dog as a prop!), with many bumps and falls along the way, Lewis took his first steps independently. I recorded it for my husband to watch while on his tour.

We decided the army life wasn’t the best for our family so after around two years in Germany, we came back to UK. Lewis’s development has come on leaps and bounds. It was a huge turning point when he started at an amazing mainstream nursery and school as he has learned to speak, and is learning to read and do maths.

Lewis and trampoline

In May 2019, Lewis suffered a significant seizure. These seizures continued on and off until July when he was diagnosed with epilepsy. We have an amazing health care team around us, weekly conductive education sessions through a charity called Rainbow Hub, support from a charity called High Five. Lewis can walk and run short distances and he loves riding on his trike.

He is as stubborn as a teenager but he has the best sense of humour. The little dog which used to sit on his incubator, which Lewis named Doug, is now above his bed, still watching over him.