Seb's Story

Four-year-old Sebastian Hession, from Wellesbourne, became a patient at our hospital when he was just three months old. 

Seb and his identical twin brother, Alex, were born three months premature. The boys were monochorionic diamniotic (MCDA) twins, meaning they were dependent on a single shared placenta. Their mum, Liz, was monitored closely throughout her pregnancy at their local hospital but apart from a difference in growth, nothing specific flagged on her scans for Seb. The family were expecting the arrival of two healthy little boys, but just two days after they were born, Seb had an unexpected grade four bleed on his brain.  

While not uncommon in premature babies, Seb developed hydrocephalus which required surgery to have the fluid drained. Once he had stabilised, he was transferred to our hospital’s paediatric intensive care unit (PICU) at three months old, to receive surgery to insert a shunt into his brain. Routine checks brought another shock for the family as Seb also had problems with his heart, which would also require surgery.  

During his recovery, Seb also started to present with unexpected stomach issues. He was tested for and later diagnosed with Hirschsprung's disease – a genetic condition which affects the large intestine in one in 5,000 babies – for which he went on to receive another operation to create a stoma. In total Seb has now received 11 surgeries in his short four years, including open-heart surgery twice. Because of this Liz, along with Seb’s dad, Ben, know only too well how important the hospital environment is, especially when it becomes a second home.  

Looking back to when they first arrived at our hospital, the couple’s first impression wasn’t great. Liz comments: “Our journey to the hospital was horrific. Alex had just been discharged to go home after three months at our local hospital and we should have been excited to finally start celebrating life as a family of four. Instead we found ourselves on the way to a completely different hospital we’d never been to before, which felt so far from home.  

“Seb was transferred in the middle of the night and arrived separately by emergency ambulance - we were desperate to find them and be with him.  We arrived by car and, having never been to the hospital before, we found it difficult to know if we had even made it to the right hospital. There were no clear signs to tell you where the hospital is as you walk through the city from the car park or train station. The main sign is set back from the road and so we weren’t sure if we were in the right place. The last thing we wanted to do was second guess if we’d come to the right place. 

“Once inside, we were faced with a long, dark corridor which I wasn’t even sure was the main entrance. There was no-one to greet us and there were no signs. we were stressed, tired, confused and unsure of where to go. We eventually spotted a reception desk, which looked more like a security desk, and managed to make our way up to PICU where Seb was.”  

The family had to juggle being with Seb in hospital and being at home with Alex, due to COVID restrictions. Liz continues: “We weren’t allowed to bring Alex onto the ward to see Seb, however given the option we wouldn’t have wanted to bring him anyway as it was a very overwhelming place for us to be, let alone a baby.  

“As the boys have got older, it’s become harder to keep Alex entertained when he comes with us. When you first come into the hospital, you don’t feel like you’re in a children’s hospital. There’s nothing fun for the kids to see and do. The building itself is very imposing and can look scary to a child.  There is nothing to distract or entertain them and there’s not really a space to relax before appointments. Many of the outdoor spaces are inaccessible or closed and often the cafes and restaurants are busy, making it hard to manoeuvre with a double buggy, as well as Seb’s wheelchair. The toilets, in particular, are also difficult to navigate.”  

By contrast, Seb is also cared for by the colorectal team in Waterfall House, which has its own separate entrance. Their experience when they visit here is totally different. Liz said: “Waterfall House is bright and airy, and the Roald Dahl windows make it a really child-friendly place to be. We love spotting the characters we know and talking about the different people on the pictures. It feels a lot more spacious too. There’s been times where I’ve opted to go through this entrance instead as it’s a much nicer experience for us all and means we’re all a lot calmer and relaxed ahead of appointments.”  

We’re working with families, such as Liz’s, to ensure the new entrance will cater to their needs and provide a safe, welcoming and calming space for them to take a break, relax or entertain their little ones away from the hustle and bustle of the wards or outpatient areas. Many families find coming into hospital challenging and we need to reduce their anxiety so they can engage better with their treatments. Our vision is to make our hospital feel more magical and be a place our patients want to come instead of one they feel afraid of.  

Liz said: “Seb will be a patient at the hospital until he’s 18 years old and there’s nowhere else I’d want him to be. The care we’ve all received from everyone at the hospital has been exceptional, but I can’t express how much the new front entrance will transform the experience for families like mine. It will truly represent the world-class care the teams provide before they even reach the front door.”