Shine news
6th February 2020
The family of a 16-month old boy has teamed up with Shine – the national charity dedicated to improving the lives of people with spina bifida and / or hydrocephalus (SB/H) – to give everyone the Heads Up on Hydrocephalus this week as they launch Hydrocephalus Awareness Week, which runs from Friday 7 February 2020.
Craig and Leigh-Anne Lomas, from Stradbroke in Sheffield, were shocked to discover that their unborn son, Claye, had hydrocephalus during his routine 20-week antenatal scan.
The condition affects one in every 1000 babies born (congenital hydrocephalus), making it the most common reason for brain surgery in children. It can also develop at any point in a person’s life (acquired hydrocephalus) as a result of infection, haemorrhage or injury to the brain.
It causes fluid inside the head and spine (cerebrospinal fluid or CSF) to accumulate in the brain. Left untreated, it can lead to increased pressure on the brain and in some cases, is life-threatening.
Prompt treatment is almost always required and usually involves surgery to implant a shunt – a thin tube – into the brain so that excess CSF can be diverted (normally to the abdomen) to relieve pressure on delicate brain tissues. In the UK 3000 shunts are inserted every year.
Sadly, until recently a staggering proportion of these procedures have resulted in post-operative infections. It’s a serious problem, requiring long hospital stays, lengthy treatment with antibiotics, further surgery, and the possibility of meningitis and even irreversible brain damage.
But following initial research funded by Shine – the charity that provides free membership and specialist support for anyone living in England, Wales and Northern Ireland with spina bifida and / or hydrocephalus – and led by Roger Bayston, Professor of Surgical Infection at the University of Nottingham, a novel process was developed, which allowed shunts to be impregnated with antibiotics during manufacture. The BACTISEAL shunt was then launched.
A subsequent study – the BASICS trial – saw researchers from the University of Liverpool, Alder Hey Children’s NHS Foundation Trust and The Walton Centre NHS Foundation Trust put the new process through its paces, comparing infection rates with silver and plain shunts. It was the largest ever clinical trial for hydrocephalus, involving over 1600 patients at 21 neurosurgery centres across 7 years (2012-2019).
Their results, published last year, showed that the BACTISEAL ® catheter offered remarkable results, as overall infection rates dropped from 6% to 2%, compared to plain or silver shunts, and in some patient groups, were even completely eliminated.
Ground-breaking progress like this will make an enormous impact on those living with the condition, as Claye's mum, Leigh-Anne explains: “The pregnancy had been a worrying time and we were delighted to be able to meet Claye, when he arrived – six weeks early – in September 2018.
“He was put forward for shunt surgery in his first week and he came back really well from surgery. We hoped at that stage that he wouldn’t need another operation until he was much older but after a month he became unwell and was rushed back to hospital as the shunt had become blocked.”
In all, Claye has now undergone 19 separate operations to manage his shunt and has spent much of his life under the care of staff on ward 5, the neuroscience ward, at Sheffield Children’s Hospital.
Leigh-Anne continues: “We take each day as it comes and we’re lucky to have such an amazing hospital on the doorstep – the staff there do everything to make life easier for Claye and our whole family. But, even with their incredible support, repeated admissions are extremely stressful. If we can avoid even a fraction of those by limiting the risk of infection, it would make a massive difference. It goes without saying that we’d do anything to help reduce Claye’s risks – that’s why we’re so excited about the new type of shunt.”
Shine’s Health Development Lead, Gill Yaz, says: “The success of the BASICS trial has offered real hope to our membership. BACTISEAL ® provides the best results, first time.”
Until now, the type of shunt used in any procedure has been at the discretion of the operating surgeon. But Shine wants to make sure that it is used as standard in all new shunt surgery from going forward.
Gill continues: “By reducing the risk of shunt infections, we can avoid unnecessary stress and improve the overall outlook post-surgery for patients like Claye and their families. And at a time when budgets are increasingly stretched, an average cost-saving of £130,000 per infection avoided could save the NHS around £7 million per year.
“We’re asking everyone to show their support during Hydrocephalus Awareness Week by signing our petition so that we can help to make sure every shunt procedure in England, Wales and Northern Ireland is carried out using a BACTISEAL® catheter. First time, every time.
“We’re immensely proud that Prof. Roger Bayston’s initial study was made possible because of Shine’s support, and we are excited at the prospect for everyone affected by hydrocephalus. It’s progress like this, together with access to specialist support and services and a growing understanding of the impact hydrocephalus can have, which makes a tangible difference. It’s a combination that will help our members face fewer set-backs and live life to the full.”
To show your support to get it right ‘first time, every time’ you can sign the petition at www.change.org/firsttimeeverytime