Diagnosed with Hydrocephalus at five weeks old – Mum shares Arthur’s story
When Arthur was just five weeks old, Mum Roxanne from Walsall was told he had a rare condition called Hydrocephalus, a build-up of fluid in the brain that causes severe pressure in the head.
Roxanne spoke to us about her son’s journey for Hydrocephalus Awareness Week (6 March – 12 March), to help raise awareness for the illness.
She said: “When I was pregnant with Arthur, we found out he had a problem with his heart. The two main arteries that carry blood away from Arthur’s heart were reversed.”
Arthur underwent an emergency surgery called an arterial switch with Birmingham Children’s Hospital’s Cardiology service when he was ten days old.
Roxanne said: “The surgery was a success, but a few weeks later, I noticed another problem with Arthur. His head was growing into an unusual shape and as his mum I just knew something wasn’t right.”
At five weeks old, the veins in Arthur’s head became very visible and his eyes locked into a downward position. Roxane took him to their local Accident and Emergency Department, where he was diagnosed with Hydrocephalus, which is a build-up of fluid in the brain. It is a condition that affects only 1 in 1000 babies and can be life-threatening if left untreated.
Three days later, Arthur was transferred to Birmingham Children’s Hospital’s Specialist Neurosurgery Department for treatment.
Roxanne said: “Our whole world changed overnight. I was very emotional when I found out, but the Neurosurgery team were so supportive. They explained everything to me so that I understood what was happening and were there for me throughout.”
Amy Drew, Clinical Nurse Specialist and Mr Desiderio Rodrigues, Lead Neurosurgical Consultant, were part of the team that oversaw their treatment. Mr Rodrigues performed ventriculo-peritoneal shunt surgery on 19 February 2022, just five days after Arthur was diagnosed, to insert a shunt to control the flow of fluid to his
brain. The team perform around 140 of these surgeries every year.
Roxanne added: “The surgery went well, and Arthur was like a different baby. He was much more settled and slept through the night; it was such a relief.
“Having a little one who is poorly is very difficult. I’m a single parent of three children, my daughter who is two and my son who is ten. My son in particular was so worried about Arthur, he was too scared to even hold him until he was 10 months old, but his school have helped so much and have offered him lots of support.”
There were a few more bumps in the road for Arthur, and he needed a shunt revision surgery to correct a blockage on 15 February 2023. It’s an operation that is needed in around 50 per cent of children who have already undergone a shunt insertion procedure.
Roxanne said: “Before this surgery, Arthur showed no signs of wanting to walk, and I was worried he never would, but on the first day back home after his revision surgery, Arthur stood up on his own. As a mum, it was just the most amazing thing to see. It felt like such a blessing. He’s come through so much; we are all in awe of Arthur.”
Arthur will be closely monitored as he grows up and will continue to be receive regular check-ups at the Children’s.
Roxanne added: “The ward feels like a family to me now. Having Amy, our Clinical Nurse Specialist, there to support me throughout has made such a difference. The whole team are truly amazing.”
This Hydrocephalus Awareness Week, we want to 
increase awareness of the condition and thank our hardworking Neurosurgery team, who are by the side of patients and families all year round who are living with the illness.
Roxanne said: “Before Arthur was diagnosed, I had no idea what Hydrocephalus was. I think it’s so important that we raise awareness so other parents know about the condition and know what to look out for.”
Roxanne added: “I want other parents to know that you are not alone and to know that there is so much support available if you are going through a similar journey.”
Mr Rodrigues, Arthur’s Neurological Consultant, said: “Arthur is a brave young boy who we first met on Ward 10 when he was just six weeks old.
“It has been a pleasure to see Arthur continue to grow and thrive in the last year, despite his rocky start in life. After his shunt revision surgery last month, he has bounced back brilliantly and is back to being a smiley and happy baby. He is a little star, and it is always a pleasure to see him smile.”