My son’s hydrocephalus and cerebral palsy diagnosis – Sal’s story

Sal describes the challenges her son faces as a result of his condition but how his school has helped his progress.

Lennie was born at 28 weeks and weighed 3lb. He was extremely poorly with e.coli meningitis and severe sepsis so he was in the NICU for 4 weeks at the Leeds General Infirmary and then six weeks in the High Dependency Unit. Scans showed that he had bilateral grade 4 brain bleeds and significant kidney problems. Then, a week before his due date, Lennie came home, weighing 4lb 11oz.

I desperately wanted to breastfeed Lennie like I had with my other children and I managed to do so thanks to the amazing care and support that the neonatal team gave us in allowing me to stay with him for a week in the parent room on the unit to aid breastfeeding.

Lennie was a happy baby even with the severe reflux that lasted for a few weeks. He gained weight, albeit slowly. At 7 months, we noticed that Lennie's head circumference was increasing significantly. Scans showed that he had large ventricles in his brain, caused by a build-up of fluid, and he was diagnosed with hydrocephalus. To relieve the pressure caused by this extra fluid, Lennie had a ventriculoperitoneal (VP) shunt fitted the next day.

These were scary times. It is incredibly difficult to see your baby have a general anaesthetic and go through brain surgery. But the ward staff were incredibly kind and reassuring at this time, and we also had support from another family whose child had hydrocephalus.

For the first few months, we were trying hard to focus on just enjoying our baby as other parents of premature babies advised us. But it was difficult not to compare Lennie's development to other babies of the same age with friends or at baby groups. It soon became apparent that Lennie was not meeting milestones such as being able to control his head, rolling and sitting.

We were allocated a physiotherapist from the community team, and eventually an occupational therapist and speech and language therapist. Whilst these individuals were passionate and committed to their roles, it soon became apparent how underfunded and stretched the community services were.

Staff shortages meant we were left without a physiotherapist for six months and then moved on to three blocks of physiotherapy per year. This was at a time when we were most concerned about Lennie not reaching his milestones, and it left us feeling quite alone and unsupported.

We started to research what else was out there to support our boy and give him the best chance of being as independent as he possibly could be. We found a school for children with neurological motor disorders, which practises a style of learning called Conductive Education, combining therapy with academic learning.

Within a week of attending 1:1 sessions, at 18 months old, he was commando crawling, and was able to explore and choose toys. Seeing Lennie move with independence for the first time filled us with hope.

Lennie faces many challenges in life on a daily basis, in his own physical limitations and his health. He has both Spastic and Dystonic Cerebral Palsy, which means he is unable to stand or walk independently, though, incredibly, he is learning to walk with sticks. Because of his hydrocephalus, he also experiences shunt headaches, and his attention, concentration and processing are also affected.

Other challenges come from society, as, for example, there’s a lack of accessible play equipment in parks and of accessible toilets when we are out and about. However, we don't believe that these challenges should be barriers to a full and exciting life.

Lennie is now 8 years old. He swims, runs, sings and plays the piano. He has his own Facebook page to record his playing (Lennie's Tunes). He also loves to tell bad jokes and crash into things in his wheelchair. He is a funny little boy who has been through so much, and has challenging times ahead, but he also has so much to offer the world and has so much fun exploring it.

You can read about Lennie's incredible piano challenge to raise money for his school at https://www.bbc.co.uk/news/amp/uk-england-leeds-52830086