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Proud of our little superstar: Abi and Steve’s story

Parent carers Abi and Steve Bell have written about their experience of caring for their son Jacob. This is their story in their own words about their journey so far.  

Our son Jacob was born with a large hole in his heart (VSD) which was only discovered on the day of his birth. It was a huge shock that we were not prepared for. Our first trip out with him was to Bristol Children’s Hospital six days later, to see a heart specialist.

He confirmed the diagnosis and said that Jacob would need surgery at six months of age, when he would be strong enough to undergo the anaesthetic. However, when they saw Jacob for a check-up at 9-weeks-old, they decided the operation was needed sooner and he was booked in three weeks later.

It was absolutely heart-wrenching handing him over to the surgeons that day, but after eight long hours in surgery, we were given the great news that all had gone well, and the hole was successfully closed. The feeling of relief didn’t last long, as he suffered a seizure a few hours later and lost his eyesight for 72 hours. This was a very overwhelming time for us as we felt so helpless and alone, but we were thankful that his sight loss turned out to be short-term and his heart was mended.

As our focus then switched from his heart, we noticed that he was failing to meet his developmental milestones. So, the day before his first birthday his health visitor completed a Schedule of Growing Skills (SOGS) assessment, which confirmed that he had ‘Global Development Delay’.

I returned to work from maternity leave four days after the assessment, without the realisation of Jacob’s diagnosis and the road that lay ahead of us fully absorbed.

As the appointments with various professionals started flooding in thick and fast, we were becoming increasingly overwhelmed with all the new information we were learning. Having very little family support at the time, we felt like we were ‘drowning’.

It was at this time, that we learned of Swindon Carers Centre. I contacted them and a lady came out and registered us with them.

Since then, we have found Swindon Carers to be an enormous support to our family. They send us regular newsletters with events and activities. By attending events organised by them, they have given us the opportunity to meet other carers in a similar position to ourselves, which has allowed us to make life-long friendships.

At six-years-old, Jacob is still unable to talk or walk unaided. He is fed liquids through a PEG feeding tube (due to a weak swallow) and has had other minor surgeries. He has attended hundreds of hospital appointments, with one of those being to enrol on the 100,000 Genomes Project via the John Radcliffe Hospital. He was enrolled in 2017 to see if they were able to find a cause for his delays through analysing his gene data. However, it is a very lengthy process and as a result, we are still awaiting an update from their findings.

Thankfully for us, Swindon Carers have always been at the end of the phone when we have needed them, for help and advice. Nothing seems to be too much trouble for them.

Some days life with a disabled child can be exhausting, but one flash of Jacob’s beautiful smile and his highly infectious laugh, is enough to lift our spirits. We could not be prouder of our little superstar and what he has been able to achieve despite his extra needs.

We would just like to take this opportunity to say THANK YOU to each and every one of you at Swindon Carers Centre. We would be lost without your support, especially in the early days of Jacob’s journey.