NHS England to fund pioneering new brain surgery for children who are deaf

Two highly specialist teams at hospitals in Manchester and London will perform Auditory Brainstem Implants (ABIs) surgery for children who are deaf across the country.

The surgery is for children who are profoundly deaf, aged five or under, who are unable to use conventional hearing aids or implants because their inner ear (cochlea) or auditory nerve did not develop properly.

The highly complex procedure involves inserting a device directly into the brain to stimulate hearing pathways, bypassing the cochlea and auditory nerve that have not developed properly.

Professor Stephen Powis, NHS medical director, said: “This truly life-changing surgery, which allows youngsters to hear their parents’ voices for the first time, will now be available across England for children who are deaf who have no other options.

“As we put the NHS Long Term Plan into practice, the health service will continue to make the very latest, innovative treatments, like this, available to patients across the country along with world class care.”

After the implant has been inserted, long-term support is crucial to help children learn to listen and understand new signals from their implant.  This may be as simple as recognising their own name being called, but it may also involve understanding simple phrases.

Manchester University NHS Foundation Trust and Guy’s and St Thomas’ NHS Foundation Trust in London will offer the cutting-edge surgery.

Health Secretary Matt Hancock said: “I’m in awe of the extraordinary medical advances made possible by the brilliant specialists working in our NHS.

“This surgery has the power to transform the futures of young children who are deaf and give fresh hope to more families.

“Hearing transforms children’s lives. I’m delighted at this progress – all part of our NHS Long Term Plan which will secure the NHS for the future.”

Susan Daniels, Chief Executive of the National Deaf Children’s Society, said: “Every deaf child is different and for some, technology like auditory brainstem implants can be the right option and can make a huge difference to their lives.

“With the right support, deaf children can achieve just as well as their hearing peers and this investment is another important step towards a society where no deaf child is left behind.”

Gemma Twitchen, Senior Audiologist at Action on Hearing Loss, said: “Its fantastic news that some deaf children, who are unable to wear conventional hearing aids or implants due to under developed Cochlear or auditory nerves, will be given the option to be assessed for pioneering surgery and long term support they need to access the sensation of sound. Whilst this will only affect a small group of children per year, it’s positive to see some forward thinking, with services for deafness hearing loss being implemented as opposed to cut and parents given greater choice to support their child.”

The national service is being led by neurosurgeon, Mr Scott Rutherford, from Manchester University NHS Foundation Trust, and Professor Dan Jiang, from Guys and St Thomas’ NHS Foundation Trust, who will work with a dedicated team of highly specialised surgeons, audiologists and speech and language therapists.

Mr Scott Rutherford, neurosurgeon with the Manchester University Foundation Trust team, said: “Manchester University NHS Foundation Trust is delighted to be chosen as one of only two centres in the UK to offer auditory brainstem implants as a treatment for children born without hearing nerves.

“A commitment by NHS England to fund the service for children will secure its future and allow more families to benefit from our clinical expertise.”

Professor Dan Jiang, consultant otologist/skull base surgeon and clinical director of the Hearing Implant Centre at Guy’s and St Thomas’ NHS Foundation Trust, said: “The London Auditory Brainstem Implant service located at St Thomas’ Hospital has combined the clinical expertise from Guy’s and St Thomas’, University College London Hospital, King’s College Hospital and four hearing implant centres in London, it will provide easy access to this highly specialised service for all children with these rare conditions.”

It is estimated that about 15 children per year would be assessed for auditory brainstem implantation and that about nine would go on to have the surgery, which costs around £60,000 per patient.

A few children have already been able to benefit from this pioneering surgery including four-year-old Theo Sankson, from Manchester, and seven-year-old Leia Armitage, from Dagenham, who have even started to speak after having the pioneering procedure.

Theo’s story

Theo Sankson was diagnosed as being profoundly deaf as part of the newborn hearing screening programme. At eight months old it was discovered he didn’t have any auditory nerves, so he was not eligible for cochlear implants.

Theo was two when he had an ABI at Royal Manchester Children’s Hospital, part of Manchester University NHS Foundation Trust (MFT).

Theo’s mum Imelda said: “After discovering Theo couldn’t have a cochlear Implant, all we could think about was how would he hear a fire alarm, how could we protect him from danger?

“It’s now two years since Theo’s device was activated and he can hear me calling him from upstairs. His first word was “more” and his second was” mummy” – something I never thought I would hear. Every day he uses his voice more and more and now loves to try and sing.

“We are eternally grateful to the surgical and audiology teams in Manchester who have given our little boy the ability to hear and speak.”

For more information about Theo’s story, contact the MFT press office on 0161 701 7579 or email comms@mft.nhs.uk.

Leia’s story

Leia Armitage, who was born with a rare form of deafness and never expected to speak, can now tell her parents that she loves them thanks to the pioneering brain surgery.

She was missing her cochlea and auditory nerve in both ears meaning she was profoundly deaf and could not benefit from even the most advanced hearing aids. Leia was almost two years old and the first child in London to have an auditory brainstem implant (ABI) in 2013, by the team at Guy’s and St Thomas’ NHS Foundation Trust.

Leia’s dad Bob said: “We were devastated when we found out Leia was missing her auditory nerve as well as her cochlea. We thought we had no hope as her deafness was so rare, but thanks to the ABI we’ve come so far.

“It’s taken five years and a lot of rehab but Leia has defied the odds and is now putting full sentences together. There’s nothing better than hearing her say ‘I love you daddy’.”