60 years of progress

60 years of progress

Since 1966, the lives of people born with spina bifida and those living with hydrocephalus have been transformed. Improvements in healthcare, technology and understanding have dramatically increased survival and life expectancy, while also changing what it means to live well with these conditions.

Changing treatment for hydrocephalus

The early years

In 1966, shunts had only been used for a few years to treat hydrocephalus. The shunts used at that time were VA shunts, and infection rates of up to 20% were seen before surgeons began to look more closely at infection prevention. Over time, complications from shunt surgery have decreased. More surgeons placed the distal end in the peritoneum, and adjustable (programmable) valves meant that fewer shunt revisions were needed, particularly for children with symptoms of over or underdrainage.

Since 2003, shunt infections have been further prevented using Codman Bactiseal shunts, invented by Prof Roger Bayston. The silicone tubing of a Bactiseal shunt is impregnated with two antibiotics, which are slowly released in the weeks following insertion. Other advances in shunt technology include the Miethke M.scio., an implantable telemetric device which can detect and give information on the pressures in the head or the shunt, depending on where it is placed.

Devices currently in development include ShuntCheck, which sits on the skin over the shunt tubing to help rule out blockage by measuring changes in temperature as CSF flows, and the ‘eshunt’, which can be inserted via blood vessels in the groin and placed into the head, avoiding the need for head surgery.

Prematurity and Post Haemorrhagic Hydrocephalus

Around one in thirteen babies are born prematurely in the United Kingdom. Despite major advances in survival, intraventricular haemorrhage (IVH) remains one of the most serious complications of preterm birth. The blood vessels of premature babies are very fragile, and bleeds in or around the brain can block CSF pathways and absorption, leading to hydrocephalus. Treating hydrocephalus in such tiny babies is particularly challenging. Although care of premature babies has improved enormously, alternatives to shunting are still needed.

Some trials have explored flushing blood and clots from the ventricles using an endoscope before placing a temporary drain, including DRIFT and DOLPHIN. The latest trial, ENLIVEN, running from 2023 to 2029, is comparing outcomes for babies treated with endoscopic lavage with those who go straight to external drainage, currently the most common approach. Researchers are examining whether the risk of hydrocephalus is reduced and whether washing toxic blood from the brain improves developmental outcomes.

Changing care for people with spina bifida

Bladder management

For people born with spina bifida, healthcare practice has also changed dramatically. In 1966, care for babies and children with spina bifida was in its very early days. Prior to the development of the shunt, little could be done to save many babies’ lives, and as a result, little was known about how the condition affected people over time. Doctors such as Prof Zachary of Sheffield worked tirelessly to improve outcomes. It became clear that bladder involvement could lead to kidney failure through reflux, poor drainage and infection. Stoma surgery to bypass the bladder and drain urine into bags on the abdominal wall was introduced and saved countless lives.

By the 1970s, bladder dysfunction was better understood. Dr Jack Lapides showed that introducing a clean catheter into the bladder at regular intervals could help solve the problem of incomplete emptying. This remains the method many of our members use today, often alongside medication to relax the bladder and allow safe filling. Intermittent catheters have continued to evolve, with refinements including different tip shapes, slippery coatings to reduce urethral damage, and attached drainage bags.

Intermittent catheterisation and medication do not always reduce damaging high bladder pressures, and medication can have unpleasant side effects. For some people, six-monthly Botox injections into the bladder muscle allow the bladder to fill and store urine safely. Others need surgical enlargement of the bladder (augmentation), and/or the creation of a catheterisable channel on the abdomen (Mitrofanoff).

Mobility and independence

Children growing up with spina bifida in the 1960s experienced a strong emphasis on walking. Hours were devoted to exercises using parallel bars and heavy callipers, sometimes chest high. Over time, there was a shift in thinking: being able to move independently, when and how you wished, mattered more than how that movement was achieved. As a result, children born from the 1980s onwards underwent fewer orthopaedic procedures, spent less time in hospital, and experienced more ordinary childhoods as they gained independence using wheelchairs.

Fetal surgery and earlier intervention

Fetal surgery to repair the spina bifida lesion during pregnancy has become an option for some families. Closing the lesion by 26 weeks’ gestation can protect nerve tissue from damage and restore more typical CSF flow. Babies born following fetal surgery are less likely to need a shunt than those operated on after birth. Open fetal surgery has been commissioned by the NHS since 2019. Eventually, when the evidence is robust enough, a closed (fetoscopic) service using a ‘keyhole’ technique may follow, reducing potential damage to the mother’s womb.

Advances in imaging and diagnosis

Even the tests and investigations familiar to our members in the 1960s have been transformed. Many remember the discomfort of dye being injected into veins - or even into the spinal canal - before X-rays. Today, these invasive procedures have been largely replaced by non-invasive imaging techniques such as MRI, CT and ultrasound.

The progress since the 1960s has been remarkable, giving people with hydrocephalus or spina bifida a far better chance of living well, and for longer, than ever before.

Celebrate 60 years with us!

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