Published: February 2022. Date of brain injury: February 2018 (aged 7 months old)
We found out Arthur needed to have to have his first of many open-heart surgeries when he was just six months old. He went straight on the list and two weeks later we were at Royal Brompton hospital. It all happened so quickly, and I think we were just in shock.
After his initial surgery, we ended up staying in hospital for 10 weeks as a complication in the surgery caused Arthur to have a stroke. During this time one of Arthur’s consultants referred us to The Children’s Trust in Tadworth.
The stroke had left Arthur with a severe brain injury, and he was unable to eat, drink or sit up for himself. As well as the consultants, Arthur’s occupational therapist at the hospital also recommended a personalised rehabilitation programme at The Children’s Trust – advising how it would help him relearn some of the skills he had lost.
I’m not going to lie; it was pretty scary. We were coming straight from a hospital setting and were very nervous. We just wanted all the hurt and pain to go away and dreaded being in another clinical environment.
However, we were amazed when we arrived at The Children’s Trust. It was dramatically different from where we had come from – it was incredible!
Arthur was unable to do anything really. None of the things you would expect a toddler to be able to do. He couldn’t roll over at all, he couldn’t sit, eat, or drink.
He was put on a course of speech and language therapy, physiotherapy and occupational therapy. We had goals we wanted to reach in the sessions, such as strengthening his right side and sitting up for himself, and he started to make great progress.
After a few weeks Arthur could roll over on both sides and was even sitting independently. However, before we could finish the 12-week placement Arthur became unwell again.
Another open-heart surgery
Arthur went into major heart failure and was rushed to the hospital for his third open-heart surgery. The surgeons tried numerous blasts of a blood clot busting treatment called TPA but unfortunately it was unsuccessful – this meant that Arthur had to have a fourth heart surgery where his valve was replaced.
Thankfully this surgery was a success. We were in hospital for 11 long weeks, and it almost felt like we were starting the whole process again – but Arthur was alive.
We were back home for Christmas but there wasn’t much time to create any festive family traditions as we fell into a routine of blood tests, hospital check ins and a list of medications.
Arthur then needed another heart surgery in April 2019. We felt he was stable enough and it was the right time to change his pacemaker. Again, we were in hospital for about 10 weeks.
Return to rehabilitation
Due to his first rehabilitation placement being cut short, when Arthur was well enough, we were invited back to The Children’s Trust.
Despite everything he had gone through, he never gave up. Every session he put his all into it and by the time we left Arthur could stand independently and walk with very little support. Arthur wouldn’t be where he is now without his time in Tadworth.
He left there in November 2019 feeding tube free, after being completely dependent on it for over two years, and able to eat and drink by himself.
He had also started to say words and even put them into context. Arthur had missed out on so much, but the future looked bright, and we were so excited to get back home.
The impact of the pandemic
Sadly, 2020 saw the start of the COVID-19 pandemic and another challenging year for Arthur. The lockdown periods were especially hard. We missed out on a lot of therapy sessions.
Appointments were cancelled and although video calls were put in place – it just wasn’t quite the same. Especially for a toddler! Some therapists were even redeployed to support other services, so it had an impact on Arthur and his needs.
That being said, we definitely still used the time to continue Arthur’s progress. We got given a beautiful green walker and it built his confidence up so much. He learnt to walk in it, which amazingly led to him being able to walk on his own too.
During the first lockdown we found out that one of Arthur’s pacemaker leads was starting to fail. It meant Arthur would need another surgery.
We spent his third birthday in isolation and in July 2020 Arthur underwent a third pacemaker insertion – although this one was in his chest with the lead inserted directly through his heart.
Arthur is now dependant on his pacemakers due to complete heart block. He has one in his chest and one in his abdomen. The abdomen one is a backup, so he is now mainly paced via the most recent one in his chest.
Iron Man strength
He’s incredibly proud of his little iron man boxes and often says they are his muscles!
We still have to check his blood levels (for his mechanical valve) at home at least every other day, which he’s incredibly brave at, and thankfully the novelty of picking a different plaster each time has not worn out.
Unfortunately, Arthur’s surgeries aren’t over. As he grows, they will need to replace the valves and all parts of the pacemakers – but it is all part of his journey, and he is so patient and understanding at every appointment.
Ongoing challenges from the stroke
The stroke has very much affected Arthur’s everyday life. It affected the whole right side of his body and damaged his vision permanently to the right of both eyes.
Some days he’s very tired and struggles with basic tasks so we follow his lead – other days he’s full of beans. We are still having regular occupational therapy input and physiotherapy sessions, as well as regular at home rehabilitation care from both his dad and me.
He is still on thickened fluid due to his unsafe swallow but that’s doesn’t bother him. He loves chocolate kinder eggs and Pizza Express is a firm favourite for dinner.
Starting school and becoming a big brother
Arthur’s most amazing achievement so far is that he started full time school in September 2021. We didn’t think he would manage a full five-day week, but he gives it his absolute all and has the most incredible one to one teacher to support him.
He can now count to 14 and find the letters in the alphabet to spell out his name. Arthur also loves to sing nursery rhymes and dance around the house. Just recently he has learnt to bend both knees at the same time independently when he’s standing.
The most heart-warming thing is that he has made so many friends. Although his best friend is definitely his new baby brother, who he adores and protects at all costs.
We are so proud of Arthur! He will always be my baby boy and I can’t wait to see what he does next. I’m sure he will continue to surprise us living his life with no limits – just pure laughter and fun!