Kayla’s journey at GOSH

Kayla’s mum, Rachel, shares her daughter’s story: “In June 2011, when Kayla was almost two years old, I noticed that she just wasn’t herself. As a toddler she had been running around everywhere and chatting constantly, and this all stopped suddenly. She stopped walking, talking, and eating, and became really stiff.

“We went to our local hospital and that’s where our journey started. Initially it was thought she had a virus, so we returned home and kept an eye on her. Things didn’t improve, so we were admitted to St George’s and remained there for about two weeks. It was after a scan that we discovered she had fluid in her lungs and around her heart.”

Coming to GOSH

“We were blue-lighted to GOSH and we stayed there on and off for the next six months. As soon as we arrived out of the ambulance, Kayla went into surgery and the fluid was drained from around her heart and lungs. Kayla was diagnosed with juvenile arthritis which was a huge shock to us.

“We thought arthritis was something that older people were diagnosed with, and that it was to do with cartilage and age. Kayla’s type of arthritis relates to the build-up of fluid around her joints. One of the complications of her condition meant that she suffered from fluid build-up elsewhere in the body, which was why there was fluid around her heart and lungs. The stiffness came from the fluid build-up around the joints, but the fluid build-up elsewhere could cause serious issues.

“From her diagnosis onwards, it became a journey of figuring out how to manage her condition, and get her weight back up. Until we got the medication right, it was a rollercoaster.”

Treatment journey

“We started off on methotrexate to get everything under control and we left GOSH with that being her treatment. One of the things I’m grateful for was that before we left, we were taught how to do the injections at home. As she continued the treatment, it was working but I now had a strong two-year-old who I was trying to inject by myself every day, and that was not working. I was finding things very difficult.

“I discussed the fact that it wasn’t working for us as a family during our follow-up appointments with the team and after a little while her treatment was changed. It wasn’t an immediate switch but the fact that my concerns were listened to meant a lot.

“GOSH took this on board and thankfully the tocilizumab treatment that we changed to worked just as well. It made a huge difference to us in terms of giving Kayla some control back over what was happening to her, so she wasn’t fighting me every day.

“Gradually, the gap between treatment was made longer each time to around six weeks. The treatment worked really well and from the age of seven, we moved to monitoring, which meant she wasn’t on any medication at all. We continued to have follow-ups at GOSH, and these are now yearly.”

Support from GOSH staff

“During Kayla’s first stay at GOSH, I stayed on Penguin Ward with her. We split time with Kayla between me and Kayla’s grandmothers. My mum formed a lovely bond with the nurses, and they made her feel just as welcome. They would often ask after my mum to check she was alright which was lovely.

“The Play team were absolutely brilliant. They would acknowledge me as a parent, but their focus was very much on Kayla. They were her friends, and they made her feel special and as if hospital wasn’t a terrible place to be. She felt important. All the extra things the Play team did with her were amazing. When she would do arts and crafts, I could stop for a minute and have a nap or think, without having to be mum! It meant I could breathe and still be reassured that she was having a nice time. The opportunity for magic was all around for her.

“The level of effort and attention that GOSH staff put in for Kayla was incredible. She formed a strong bond with one of the nurses who inserted her cannula – she would get very distressed about the process, but the staff would call for this particular nurse and wait for him to come, rather than rushing us or stressing her out. This meant she could have some control over what was going on with her and it gave her some power back, even though she was small. The staff listened to her and didn’t dismiss her.

“At GOSH, they don’t just deal with parents, they treat the children as children. We felt safe with everyone and I felt relaxed knowing that she was looked after and happy. You can tell that the hospital is created for children and families immediately. As crazy as it sounds, being in hospital was actually quite nice. We felt reassured that the staff were experts, and we were going to be alright.”

Impact of the COVID-19 pandemic

“Kayla has not had any live vaccinations from the age of two because her immune system is suppressed. Anything that was non-active she could have, but the pandemic is worrying for this reason. She’s been off the immunosuppressant medication for a while now, but if something were to happen then I would worry. How would the treatment she would be given impact her?

“We haven’t been in to GOSH during the pandemic, but we have had a virtual appointment which was very reassuring.”

Kayla now

“Kayla is 11 years old now and she’s doing really well. I believe that is down to GOSH. The team have made us feel supported and given us the information we need in order to keep Kayla well.

“Kayla loves art and dancing, TikTok, and the game Roblox. This game has been a lifeline during lockdown as she can still play with her friends through it. She also loves writing, Harry Potter, and cats. She will be starting secondary school in September.

“I know we are likely to be discharged from GOSH soon which will be such a huge moment. It will be bittersweet because GOSH has been part of our lives for so long. The staff are a security net and have done so much for us. We can never do enough to thank them. They add little sprinkles of light to many brave children’s dark and difficult times.”