When palliative care nurse Susie Seymour decided to bring her seriously ill baby son Will home from hospital she knew that Hope House Children’s Hospices would be able to help.

“During my training I did a placement at Hope House and I knew it was incredible - As soon as we knew how things were going to be with Will, in the back of my mind I knew we would be alright because Hope House was there to help. I rang them in floods of tears and told this lovely lady who answered that I needed help to bring my child home,” recalls Susie.

Will had been born just five months earlier, a much-wanted first baby for Susie and her husband Chris, who is a police officer.

“Having him was everything I had hoped for and my pregnancy was entirely normal, but in the first hours after he was born we spotted he was doing odd shuddering movements that were really different to the usual reflex movements you see in babies,” says Susie.

A concerned midwife arranged for Susie and Will to be taken by ambulance that night to the neonatal unit of their local district general hospital for tests. While there he suffered huge convulsions and ended up in an incubator on the neonatal unit supported by tubes

An incredibly rare condition

“An ultrasound scan was taken and the consultant told us Will’s brain hadn’t developed properly. She said it was incredibly rare and what exactly it meant for Will they didn’t know. She said it might mean he died very soon, or that he could have a longer time to live. We were devastated.

“Two days later we came home. We were shell-shocked and it all seemed like a bad dream. We knew there was nothing they could do but it didn’t feel right coming home with no help and no support, and just being told to wait for an outpatient’s appointment. You speak to people who have received really catastrophic news and it is absolutely true, you hear it but it just doesn’t feel real.

“Within 24 hours Will was having so many seizures that he either seemed to be asleep or having convulsions. Over the course of the next few weeks we yo-yoed in and out of hospital. Then Will started to do something else which looked like a seizure but seemed very painful, like something was really hurting him.”

Will’s condition was eventually diagnosed as Infantile Spasms, and he was started on high dose steroids which his little body found really difficult to cope with.

“The spasms started to lessen and it looked hopeful, but then it happened again and all the other symptoms got so much worse. We were back in the hospital for quite a long time with Will on all sorts of different drugs and sedated and we were beyond desperate.”

Will was eventually transferred to Birmingham Children’s Hospital.

Prepare for the worst

“The consultant told us he was sick enough to die. I started to think we needed to prepare for the worst, but I didn’t want to give up hope at all. We were under no illusions, they definitely didn’t hide from us how sick and fragile he was,” says Susie.

“The following months were spent at Birmingham, seeing the neurology team every day and tweaking the medication because he was on so much. Most nights I slept in a chair by Will’s bed. Sometimes things got worse, sometimes they got a bit better, but every day he was still having multiple seizures. It was really difficult being there but he was having the best care and they acted on every single symptom.

“Then they called a big meeting and basically told us how bleak Will’s outlook was, and that it was time to stop the treatments because Will kept picking up chest infections. They wanted us to agree to a ‘do not resuscitate’.”

That was the moment that Susie and Chris decided they wanted to take Will home to care for him. Susie’s specialist nursing background caring for terminally ill adults meant she was aware of the enormous amount of support they would need. After her call to Hope House, our community liaison nurse Lynn visited them at home.

“Lynn came out to see us and she worked her magic. She was the first healthcare professional that had been around Will and hadn’t been alarmed. Lynn was so calm and had such a big impact. It was just what we needed.

“She offered for the three of us to go to Hope House for the day, to have Sunday lunch and just have a look around. We had barely left the house with Will up to that point and it was just such a treat.

“Chris had never set foot in a hospice before and was worried he might see children dying or parents sobbing, but that was absolutely not what happened. There were children playing and the nurses all came and introduced themselves to us.

He is an absolute cuddle monster!

“When Will cried one nurse asked if she could hold him and give him a cuddle. Nobody had ever done that before – it meant so much to me. To this day he is an absolute cuddle monster and just soaks up all the attention he receives at Hope House. I remember just watching her and it was the first time that I had seen somebody sit and hold him comfortably, and everybody around was just so normal and matter of fact.   

“Lynn suggested we went up to the lounge for a cup of tea, which was the first time ever we both left his side at the same time. It felt really strange but really needed.

“We visited again with my parents and parents-in-law. Chris, Will, myself and my mum all went in the physiotherapy pool and Esme the physio came in with us. It was so lovely. It was – and still is - the only place that we get any sense of normality as a family.

“Respite stays with Will are my opportunity to enjoy him without being his carer. I love looking after him but when we are at Hope House I can just immerse myself in enjoying being his mum and not thinking when his next meds are due. We really are treated like kings and queens.

“Part of Will’s condition is that he is very, very visually impaired. We are quite restricted at home in terms of resources but at Hope House the play specialists and facilities give him wonderful experiences. They have the skills to do that and the confidence and competence to do it alongside knowing that he is likely to have a seizure and he might need some help clearing his chest.

“Will absolutely adores the pool at Hope House. He gets a lot of dystonia (muscle spasms) so that is incredible for him and he also loves as many baths as possible. He loves being outdoors in the gardens and adores all the attention that he gets. Watching him interact with the other children is also special because it doesn’t happen at home and physiotherapist Ula’s massage techniques and physio are fantastic.

“Will’s obviously had a lot of time in hospital and that has been difficult and very distressing for him. At Hope House we can absolutely see that he is comfortable and settled. Chris said to me there is never a miserable child there and you do see children with all different challenges and you do get to observe how the care is adapted to each child individually.

“Without Hope House in our lives I think it would be lonely, it would be bleak, and it would be so much harder. Respite care is amazing but, for us, it is as important having people who listen to us, who take us seriously, and who take the time to get to know Will and us.

“Julie, the clinical nurse specialist, has been absolutely incredible. She is just such an expert but nothing is too much trouble, nothing is small, nothing is silly. Having the reassurance that someone like Julie is looking at the whole picture of Will’s health is incredible. There is nowhere else that looks at the full picture of how we all help Will to be Will.

“I think about families who don’t access Hope House that could, and their exasperation and exhaustion of trying to be a parent to their child and be a 24 hour carer. Then you’ve got the overlay of managing the calendar, of appointments and chasing people after things like home adaptions.

“What happens from here none of us know. We are already in uncharted territory. But to think of not having Hope House is really difficult. I feel a wave of anxiety just even thinking about it.”

You can ensure that seriously ill children like Will and their families can always turn to Hope House and Tŷ Gobaith by donating today. Thank you so much.