Alder Hey teen becomes youngest in the world to undergo groundbreaking awake brain surgery for rare condition

16 year old Matilda (Tilly) is the youngest person in the world to undergo awake brain surgery specifically for an Arteriovenous Malformation.

The operation, performed at Alder Hey Children’s NHS Foundation Trust in Liverpool for the first time, required her to be conscious for part of the procedure so surgeons could safely treat an Arteriovenous Malformation (AVM), an abnormal tangle of blood vessels in her brain, at risk of fatally rupturing without warning. 

Tilly, from Warrington, underwent the complex surgery which required her to be woken during surgery so specialists could safely remove the malformation, while protecting vital brain function, the first time this procedure had been performed at Alder Hey and on the youngest person in the world for an AVM.

The surgery took place in December 2025 when Tilly was 15 and successfully treated the AVM. Tilly continues to make a strong recovery.  

Tilly said:

“I felt like it was a ticking time bomb in my brain and I just wanted it out. The AVM was causing me to have frequent seizures and they were getting worse and I knew it could rupture at any point which was really scary. I felt like my life was on hold.”

Tilly was diagnosed with an AVM following an MRI scan after experiencing psychogenic non-epileptic seizures. AVMs are rare but serious conditions where arteries and veins become tangled, disrupting normal blood flow. If they rupture, they can cause stroke, brain damage and can be fatal. Tilly’s AVM was located close to areas of the brain responsible for functions such as speech, movement and vision, making treatment particularly high-risk.

Mr Vejay N. Vakharia said:

“In some neurosurgeries, patients are woken up during surgery and asked to answer simple questions for a short time before being put back to sleep while the surgeon continues to work. This allows us to treat as much abnormal tissue as possible while protecting the critical areas of the brain and is known as brain mapping. Awake surgery allows for greater precision and better long-term results but is not suitable for everyone.”

Tilly was fully involved in the decision-making and decided to go ahead with this option in December 2025. The procedure marked the first time this specific anaesthetic and surgical approach has been carried out at Alder Hey.

Mr Vejay N. Vakharia said:

“Because the procedure requires a lot of cooperation, it is not always offered to young patients but Tilly was so determined and so were we. While awake procedures have been performed on young patients for other neurological conditions like brain tumours, Tilly is among the youngest known individuals to undergo the surgery specifically for an AVM which is extremely rare.”

The surgery lasted over 12 hours, and Tilly was discharged just one week later. Follow-up scans have confirmed that the AVM has been successfully treated.

Consultant Neurosurgeon Mr Jonathan Ellenbogen added:

“Tilly has experienced a significant reduction from her pre-operative seizure frequency. We hope that removal of the AVM will help control this in the long term.”

For Tilly and her family, the decision has been life-changing. Tilly said:

“I’ve got my life back. Before the surgery, it felt like I was always worrying about what might happen. I’ve just finished my GCSE’s and I can look forward to spending time with my friends, family, my dogs, enjoying the summer holidays, and just getting on with being a normal teenager again. I’m so grateful to everyone who looked after me.”

Mum Clare said:

“This has been an incredibly difficult period for us all especially Tilly. She has navigated things no child should have to but has shown such strength and resilience.  I know her future looks bright thanks to Alder Hey. The care Tilly has received has been second to none. Everyone has been so kind, helpful and caring.”

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