Six-year-old Archie has been in and out of Bristol Children’s Hospital for most of his life. Archie suffers with scoliosis and kyphosis which means his spine is curved as well as a heart condition called Scimitar Syndrome and other issues. His mum, Hayley, tells us about his journey.
“Archie was born at 37.5 weeks. He weighed just 5lb 11oz, which was nowhere near the 9lb weight we were expecting after many scans throughout a normal pregnancy. Durning a check, they told us he was missing his right little finger and had a shortened arm. He had a scan to check his heart, and chest X-ray, but they all came back as normal.
We found out about Archie’s heart condition when he was four and a half months old. He wasn’t gaining weight, so during an appointment at our local hospital for his hand and arm, I told our consultant I wasn’t happy with his breathing. The doctor agreed and Archie had another chest X-ray, which showed his heart to be enlarged on the right side.
It very quickly snowballed. We went from one night in our local children’s hospital to being blue-lighted to Bristol Children’s Hospital where we spent the following three weeks. Archie was diagnosed with scoliosis two months later – a condition that causes the spine to curve and twist.
Archie’s conditions (or his superpowers, as we call them) affect his breathing and mobility on a daily basis, but he is so brave.
Over the past six years, we have stayed in Bristol many times. While Archie was in the Seahorse Paediatric Intensive Care Unit, his dad stayed in Paul’s House. We were so grateful for the free family accommodation provided by The Grand Appeal, directly opposite the hospital so he was never more than a few minutes away from Archie.
Hayley, Archie’s mum
“It’s heartbreaking to see your child go through huge operations at such a young age.”
Archie used a Halo Traction wheelchair every day in the run up to his spinal surgery. The wheelchair is a treatment for curved and twisted spines – it pulls at it with weights to straighten the spine so that the surgery is more likely to be a success. For Archie, he had 6kgs of weight pulling his spine straight, and he was amazing throughout it.
For four weeks, he was in it for 22 hours a day. Without it, he’d have spent those four weeks confined to a bed in ‘traction’ instead.
So, the wheelchair has been an absolute life changer. It gave him more movement in his neck and head, and he can be moved around. It meant he could still do the things he enjoys – visit the activities room, go to the on-site school, get some fresh air in the Oasis garden – all while undergoing treatment.
At the end of the month, he had his third spinal operation to put growing rods in. These rods are fused to his spine, so that as he grows, his spine will grow in the right direction, too.
The days at Bristol Children’s Hospital are long but friendly nurses and excellent doctors, along with all the other amazing hospital staff, really help keep morale high.
Archie loves to play with Lego, get stuck into arts and crafts and read books. Daily singing sessions with play therapist Alex really help too.
Having a big family and lots of friends visiting us at the weekends helps the weeks pass by. Archie is a very positive, fun and highly entertaining little lad who can’t wait to get home to see his loved ones and of course, his two dogs, Mo and Jasper!”
We’d like to say a huge thank you to one of our incredibly generous trusts for funding the Halo Traction wheelchair. Not only does it help treat debilitating and painful spinal conditions, but it massively improves quality of life for children like Archie. It means they can carry on doing exactly what they should be – enjoying their childhood.