One-of-a-kind children's stroke service gets baby moving again

Tuesday 13 August 2013

Dad Joe (left), Tom (middle), mum Ellie

Tom Lavelle, who celebrated his first birthday earlier this month is recovering from a stroke with the help of the only children’s stroke rehabilitation service in the country.

Research shows that at least 400 children and babies have a stroke each year in the UK. Evelina London Children’s Hospital, based on the St Thomas’ Hospital site, runs a unique service for children who are living with the consequences of a stroke – the only service of its kind in the country.

Tom from Northampton had a stroke as a result of complications towards the end of his mum’s pregnancy. He has been diagnosed with hemiplegic cerebral palsy, which has left him with a weakness down his right side.

The service
Consultant paediatric occupational therapist Anne Gordon leads the specialist child stroke surveillance service. She says: “When people think of strokes they tend to think of older people. But the reality is that children and young people have strokes too. People over the age of 65 are at greater risk of stroke, but a person of any age can have a stroke.”

A stroke happens when the blood supply to part of the brain is cut off interrupted (either a blockage of blood flow, or a leaky blood vessel). Symptoms may include weakness or paralysis on one side of the body, facial drooping, speech problems, vomiting, and seizures. 

Strokes in children and young people can be associated with blood clotting problems, cardiac disorders, problems with the development of blood vessels in the head, infection and sickle cell disease. In some cases the cause remains unknown.

The service at Evelina London provides young patients with medical care when they first come to hospital having had a stroke. The care they receive also includes physiotherapy to strengthen weak limbs, and occupational therapy to enable the children to be as independent as possible in everyday tasks such as eating. 

Children who need further support after they leave hospital are invited in to attend a specialist outpatient clinic. Anne said: “I provide advice, support, and guidance to ensure that children and families gain access to the right therapies and are given the greatest chance to make their best possible recovery. This involves working closely with the children's local services.”

Tom’s story
Tom spent time in the Neonatal Unit at St Thomas’ and was referred to Anne’s outpatient service for intensive therapy.  His parents – lawyer Joe, 31, and Ellie, 30, who works in HR, say: “Over the three months that we have brought Tom to the clinic, without question we have seen such a huge improvement in the use of his right arm. Thanks to the intensive therapy from Anne, he’s using his right side to pick things up and hold them.

“Medical staff didn’t think Tom would survive. He wasn’t breathing by himself and they had exhausted all drugs to improve his condition, but thanks to the Neonatal Unit, he started to get better day by day. On day 11 of his life, we were told he had suffered a stroke and he was left with severe damage to his brain. We were told this was likely to affect his speech and mobility. It also became clear that Tom wasn’t moving how he should be and we were referred to Anne’s service. We were absolutely devastated.

“It’s a miracle that Tom’s got to this stage. The stroke service and Neonatal Unit have been incredible. It’s still early days but we hope he’ll continue to do well as he grows.

“We looked in the media to find positive stories of babies born with a brain injury, and we found a story in the Daily Mail of a child who made a remarkable recovery, which really gave us hope.  We’ve also met parents of several other children with brain injuries, who are making incredible progress.  

“It is likely that Tom will have problems and challenges, but he was born around the time of the London 2012 Paralympics and we hope he’ll be as able and confident as the sports stars with the same condition.

“If Tom wasn’t born at St Thomas’ we wouldn’t have known about the service at Evelina so it’s important that other parents get to hear about it.”

The stroke team have welcomed a child stroke support worker thanks to a joint project with the Stroke Association. Anna Panton supports children and their families during key points in their lives, such as starting school, and helps them access the resources available in their local community.

Anne adds: “It’s a national service. Most of our patients are from the south east of England, but we welcome children from across the country.”

Last updated: August 2013

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