- Written by Katie Walderman
- BBC North West
An eight-year-old Cheshire girl has become the first child in the world to undergo pioneering brain surgery aimed at relieving dystonic cerebral palsy.
Surgeons at Alder Hey Children's Hospital in Liverpool performed a new form of advanced deep brain stimulation (DBS) on Hayley in January.
They hope this will reduce Hayley's pain levels and allow her to communicate.
During her four-hour surgery, surgeons inserted tiny electrodes the size of a grain of rice into parts of Haley's brain that control movement.
These are connected by wires under the skin to a battery implanted in Haley's stomach.
Electrical pulses are automatically sent back to correct the signals that cause dystonia symptoms.
The electrodes then send signals back from Hayley's brain, which can be analyzed in real time to see how the stimulation is working.
What is dystonia?
Dystonia is the name for uncontrollable and sometimes painful muscle spasms. This is usually a lifelong problem, but treatment can reduce symptoms.
It can develop at any age and can affect the whole body or only parts of it.
- Uncontrollable muscle spasms or spasms
- Parts of the body are twisted into abnormal positions – such as the neck being twisted to the side or the legs turning inward.
- trembling (trembling)
- uncontrolled flashing
Symptoms may continue or come and go. It can be caused by stress or certain activities.
“The new BrainSense technology developed by Medtronic captures brain activity data directly from leads implanted in a patient's brain,” said consultant neurosurgeon Jonathan Ellenbogen.
“This will help us accurately detect and analyze the brain signals that are causing dystonia. Access this data to adjust deep brain stimulation settings and tailor treatments for the best results. It can be personalized.”
“This is a huge advance and something we couldn't do before. It's especially important for non-verbal patients like Haley.”
Hayley, from Nantwich, was born at 24 weeks old and her uncontrollable movements make communication almost impossible.
“It's tough that she can't tell us what's wrong with her,” her father Gareth said.
“She can't tell us when it hurts, when her dystonia gets worse, whether her tummy hurts or her ears hurt, so it's really hard to help her.
“Because her movements are erratic, she can't do Makaton or sign language. So the only other real option is to eye-gaze, which means her eyes look at a screen and form words.
“But because of Hayley's head control, that's difficult at the moment. So if we can get really good head control on Hayley, we'll be able to use Eye Gaze, and that's what I'm really hoping for. ”
Ellenbogen said: “DBS is not suitable for all dystonia patients, but for some children and young people it can be life-changing.”
The device will be turned on a few weeks after surgery. Results are not immediate, but patients are expected to see improvement within a few months.
DBS technology is often used for patients with Parkinson's disease, another neurological condition.
However, Hayley's mother Emma said: “People with Parkinson's disease usually develop it later in life, so when they turn on the machine they are already in control and their brain already knows what to do.
“Haley, on the other hand, didn't have the control to learn how to do something.”
But the first signs for Haley are positive.
Ellenbogen said, “Hayley already seems calmer than when she came to the clinic, so I hope she continues to get stronger. It's a brighter future for Haley and patients like her.” I hope this is the beginning of the future.”
Finding the right level of stimulation for Haley took months of trial and error, but Emma has also noticed a marked improvement in her daughter.
“Now I can sit on the couch with her,” she said. She says, “Her daughter enjoys things much more. She nurses easier, sleeps better, and is half as irritable. Her daughter is much happier.”
