Boy with Cerebral Palsy Takes First Steps after 
Life-changing Operation

By Emma Innes

A two-year-old with cerebral palsy has taken his first steps after undergoing a life-changing operation.

Abe Astur has spastic diplegia which tightened his leg muscles, restricted his movement and, until recently, forced him to use a walking frame.

His family raised £50,000 to pay for him to have a selective dorsal rhizotomy operation, in the U.S. because the procedure is not widely available in the UK.

The operation involves severing the nerves in the spine that send messages to paralyse the leg muscles. With the tensed muscles free to resume normal movement, the patient is then able to walk.

Abe’s mother Leigh, 35, from Winchester, Hampshire, said: ‘We are thrilled it went well.

‘It’s now a case of building up Abe’s muscles he has never used before and we are pleased we went through with the operation in America.

‘His surgeon says Abe will walk independently within six months of the procedure.

‘This is the best prognosis we could have wished for and Abe has been amazing.

‘The surgery was tough and we spent a week in the hospital in St Louis, Missouri, as part of a month out there.

‘But because he is so young he didn’t fully understand what was going on and he accepted everything and handled it very well.’

Ms Astur added that the surgeons believed Abe will even be able to play sports in the future.

She said: ‘This procedure should be more accessible and medical people should be more knowledgeable in the UK.

‘It’s an operation which parents in England should be aware of but it’s just so difficult to get funding.

‘We have been talking to Steve Brine, Winchester MP, about taking this issue to Parliament and he has been a fantastic help.

‘It makes my blood boil to think children have grown up with difficulty when they could have had this operation.

‘Hopefully between us we can change another child’s life by alerting people to this procedure.’

The family, including Abe’s father Gavin, 38, and sister Thea, four, held a party to thank people who donated towards the cost of the operation.

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Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

By Lee Vander Loop
CP Family Network Editor
View similar stories.
The surgical procedure known as Selective Dorsal Rhizotomy (SDR) has gained considerable public attention within the cerebral palsy community. It is a neurosurgical procedure performed with the goal of improving motor function by decreasing spasticity in children with spastic cerebral palsy. Numerous news articles have published stories of children who have experienced life-altering benefits from SDR surgery, such as regaining the ability to walk after being confined to a wheelchair since birth.

What is Involved?

Spastic cerebral palsy, left untreated, can have a severe impact on a child’s development and can lead to serious musculoskeletal deformities. Spasticity is caused by abnormal nerve impulses traveling down the spinal cord. Selective Dorsal Rhizotomy aims to correct this through neurosurgery at the spinal cord level.
During an SDR procedure, surgeons identify and cut selected dorsal nerve roots in the spinal cord that are responsible for abnormal movement in the lower extremities. These nerve roots are identified using electrical stimulation. Identifying the correct nerve roots is vital. If nerve roots coming into the spinal cord from the skin, bladder or bowel are cut, then the patient may develop numbness or bladder or bowel incontinence.
Just as every child’s level and severity of spasticity is unique, every child’s surgery is also unique. Some children may only need 10% of the designated nerves cut where another may require a higher percentage for positive results.

Eligibility

There are strict criteria used to determine a child’s eligibility for Selective Dorsal Rhizotomy. A multi-team assessment is made which typically includes a physiotherapist, a pediatrician and surgeons. The procedure is usually recommended for young children with CP spastic diplegia without dyskinesia or ataxia. Additionally, children who are without significant cognitive disability and those with a walking capacity within reach are considered candidates. This is an extremely complex surgery, and like all surgeries, presents risks. Parents need to be made aware of all the factors involved in this potentially life-altering procedure.

Benefits of SDR

• Reduces or eliminates the need for long term pharmacological intervention, such as muscle relaxants and antispasmodic medications.
• May offer immediate reduction in muscle tone in adductors, hamstrings and dorsiflexors with no recurrence of spasticity.
• Reduced need for other orthopedic surgeries to correct joint contractures.

Risks of SDR

• The procedure is irreversible.
• Post operative weakness and loss of some motor ability have been noted.  Intense physical therapy is required to regain strength and mobility.
• May lead to deterioration in walking ability or bladder function, or later complications including spinal deformity.
• Commonly reported post-op side effect includes abnormal sensitivity of the skin on the feet and legs lasting up to 6 weeks.
• Prolonged physical therapy (specifically physiotherapy) and aftercare is required.
• Additional surgery may be required.
• The full benefits of SDR may not be realized until up to a year after the surgery.
• Possibility of excessive weight gain. (I found this weight gain side effect to be true with my own daughter. As a result of significantly reducing her spasticity with ITB therapy (Intrathecal Baclofen Pump) she gained 40 lbs in the first year after the pump placement!)

Is SDR Right for Your Child?

If you believe your child may be a candidate for SDR surgery, speak with your child’s pediatrician, therapists, orthopedic specialist and neurologist.  Be prepared for the long haul.  Gather all the information you can.  Make lists of every question that comes to mind.
As with any major surgery, there are risks and threat of complication. Do the research to ask the right questions!As you research, write down questions and concerns that you encounter in your reviews. Think of all the details of pre-op, the initial surgery, post-op, long term rehab, therapies, pain management, educational needs and adaptations, mobility, assistive technology needs post-op, and other issues of importance that may come to mind. Remember the only “dumb question” is the one you don’t ask!
Further Reading:
Long-term Outcomes Five Years After Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy
Growth in Children with Cerebral Palsy during Five Years After Selective Dorsal Rhizotomy: A Practice-based Study
About Selective Dorsal Rhizotomy

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