William’s Story

William was born on the 21st August 2014 and like most other people we were expecting a perfectly healthy baby, especially after an uneventful pregnancy and a routine labour. Unfortunately that wasn’t the case and when William was only 18 hours old he suffered a massive seizure with a bleed on the brain, and went into a coma and would not breathe for himself.  We now know this was because of an underlying, undiagnosed neurological disorder. William was placed on a ventilator in Preston Hospital’s Neonatal Intensive Care Unit, where he would spend the next six months.

We were lost in a cycle of minor improvements and cruel setbacks, with no answers and a dire outlook. In May 2015 William was on the High Dependency Ward in the Paediatric Unit at Preston when he suffered a major apnoeic episode and cardiac arrest.  He was invasively ventilated yet again and transferred to Alder Hey Children’s Hospital, where our cycle of progress and despair continued.

Alder Hey soon became a second home, and the 70 mile round trip became a daily routine. Birthdays, Christmases and school holidays went by, other families facing their own difficulties were admitted and discharged, even staff members came and moved on; while we remained.  William was making progress but he was still prone to life threatening episodes of apnoea followed by cardiac arrest. These were without any warning and usually required the attention of the crash team.  These episodes were the underlying reason why we started to think we would never reach a discharge date and that William may have to live in hospital indefinitely.

Support from WellChild

We wanted to bring him home, and the amount of things that needed to be organised and put into place to make that happen seemed like such a mountain to climb; which is when we were introduced to WellChild Nurse Esther, who helped to make the process as smooth as possible.

WellChild greatly supplemented the training we received from the hospital, and their Better at Home unit at Edge Hill University provided us with opportunities to simulate the types of situations we would have to deal with at home.

I was extremely grateful to be able to spend the day at the Better at Home unit alongside my partner and William’s care team. Throughout the day we were able to practice emergency scenarios which were very similar to what we would be expecting to deal with at home and have a full recap on resuscitation. Each scenario was filmed so once we had finished we could sit together and discuss where we could improve. It was great as the scenarios felt like they were real which gave us great confidence in each other and in the skills we had acquired. As parents who have been through it, we believe that this type of training can only benefit other families in positions similar to ours.

Once at home, we began to tick off milestones which we thought we would never see. Walks with the pram as a family of four, taking car journeys, family meals together and just generally including William in family life under one roof were all emotional times.

William's mum

Bringing William home also had a massive impact on our older son too. From the age of three, if Jamie wasn’t asleep or at school, he was either in hospital or commuting to and from. Jamie was six when William was eventually discharged and we felt like we owed him a childhood, which we could now start to deliver on.

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