Rehabilitation centre helps children with cerebral palsy
Every day, hundreds of children in Flanders spend hours on fitness machines and massage tables, at home or at the rehabilitation centre of the University Hospital Pellenberg. The centre is working hard to help children with cerebral palsy lead active lives. Photos by Dieter Telemans
The University Hospital Pellenberg improves the quality of life for children with cerebral palsy
The ride to the beach was the culmination of Georges’ three-month rehabilitation programme at Leuven’s University Hospital Pellenberg. There, she underwent radical surgery in which her legs were put right and her leg muscles deviated. Thanks to that operation – and the intensive follow-up physiotherapy – Georges is now able to move her legs and ride a tricycle. To get around the rest of the time, she uses a walking frame.
Georges is just one of several thousand children and young adolescents in Flanders who suffer from cerebral palsy, a chronic brain disorder that appears at birth or at a very young age. Some parts of the patients brain becomes damaged or paralysed. The disorder is non-progressive, but the damage to the brain is permanent and (for the moment) irreparable.
Typical symptoms include weakened or absent motor skills, problems with speaking or learning and behaviour that fits the diagnosis of severe autism. However, symptoms vary so greatly that it’s impossible to describe an average cerebral palsy patient.
Constant state of tension
In Dutch, the disorder is described as a “paralysed brain”, but that term is not only a stigma, it’s also not accurate. On the contrary, the main problem with cerebral palsy – certainly where the motor skills are concerned – is that the brain continuously fires the body’s muscles with signals, keeping the muscles in a constant state of tension. In other words, patients’ muscles are always contracting, never resting. This leads to the manifestation of involuntary movements, causing difficulties in walking or the use of arm and hand function.
cerebral palsy is a result of complications during development of the foetus in the womb
What causes cerebral palsy is still a bit of a mystery. In the past, a lack of oxygen, known as hypoxia, during childbirth was thought to be the major cause, but recently this theory has been refuted. “We now consider cerebral palsy to be a result of complications during development of the foetus in the womb,” says orthopaedist and surgeon Guy Molenaers, who leads the multidisciplinary rehabilitation centre at Pellenberg. “We also know there’s an important genetic factor in the manifestation of the disease.”
Naturally, all these children (and adults) need special assistance. But these children all go to school, are members of youth movements and so on. What’s the best way to treat them, without interfering too much in their daily lives?
One key feature that distinguishes children from adults is that they’re growing and constantly changing their motor skills. But for children with cerebral palsy, the permanent high muscle tone and spasticity stand in the way of their development. The consequences are devastating: structural muscle reductions and bony deformities that cause deviant movement, constantly bent elbows and knees and sometimes even a hip that spontaneously comes out if its socket.
“In contrast to classic orthopaedics, in which fractures and muscle strains can be repaired, we can’t intervene at the root of the disorder, which lies deep inside the brain,” says Molenaers. “Our treatment is aimed at minimising the effects of the high muscle tone and spasticity. This way, we can prevent the occurrence of muscle and bone problems, and we can limit the need for surgical treatment.”
Unique clinical setting
One way to reduce the muscle tone is to inject botuline toxine, better known as botox, in the children’s muscles. This enables the physiotherapist to stretch and intensively train the muscles. Molenaers: “One advantage of a child’s brain and nervous system is that it’s elastic to some extent. The damaged brain is able to make new connections, using other routes than the blocked ones in the body. We stimulate this ‘rerouting’ by letting our children perform physical exercises specific to each child.”
One advantage of a child’s brain and nervous system is that it’s elastic to some extent
The common goal of the orthopaedists, child neurologists, rehabilitation doctors, physiotherapists and psychologists is the optimisation of the movement of the growing child. Before treatment of a new patient can start, Molenaers’ team has to document their movement completely and meticulously.
To do this, the centre has a unique clinical setting: a high-tech laboratory for clinical movement analysis – informally known as “the gait lab”. Here, a 3D gait analysis is made of the children’s movement of the torso, legs, arms and even the hands while doing specific locomotive tasks.
It looks a bit like a catwalk – but one with a soft floor and toys on it (most children don’t understand why they have to walk back and forth for more than two hours). While they’re walking – or shuffling, assisted by a walking frame – the children’s limbs are covered with dozens of tiny sensors and electrodes.
“The electrodes measure the muscle tone while moving,” says Katrien Fagard, a physiotherapist at Pellenberg. “And the sensors emit light that the cameras around the catwalk can register.” A computer combines all these signals and churns out a detailed movement analysis in 3D. Fagard: “Based on this analysis, we can see when – and at what speed – the muscular tone of our children differs from that of healthy children.”
Based on the analysis, a treatment is determined and a patient is ready to start with a strict physiotherapy regime, often on a daily basis. In the rehabilitation room, fitness-like machines help the children bend their elbows or knees again, ride a tricycle or start to walk. The daily visits demand a lot of the children – and of their parents and family. In most cases, parents have to bring their children to Pellenberg five days a week.
Freya (not her real name) is the mother of Bruno, an 18-year-old who’s become severely autistic due to cerebral palsy. He has been here every day for six months. A couple of weeks ago, her son had surgery, by which – in the long term – he might be able to start using his legs again, having spent his entire life in a wheelchair.
“First I had doubts about the surgery,” says Freya. “I thought: Why should I disrupt his life? He’s happy the way he is. But Dr Molenaers’ team are convinced there is indeed a chance that my son could walk in the future.” To maximise that chance, Bruno undergoes physiotherapy every day.
The case of Bruno, Molenaers says, is illustrative of the diversity of his patients. “When people from outside see our state-of-the-art movement analysis lab, they often think that our patients only have physical and locomotive disabilities. They don’t realise that many patients also suffer from significant cognitive disorders, also caused by the damage in their brain. You can’t put everyone in the same box.”
Of course, there’s the cost – for the parents and for society – of treating children with cerebral palsy. “For patients who are under 18, the treatment is refunded by health-care insurance,” says Molenaers. “But the parents have to pay a lot of non-refundable medical expenses. Besides that, housing and moving a disabled child asks a lot of them. They often need an elevator at home, their car needs to be adapted to transport a wheelchair… By the way, none of these children will ever get insurance for hospitalisation.”
Move to improve
To be able to offer children a treatment that really makes a difference – without ruining their parents financially – Guy Molenaers started a relief fund in 2008 called Move to Improve. The initiative has yielded quite a lot of profit: On the wall next to the gait lab, several cheques show the commitment of the outside world to a medical issue that is often overlooked.
For a good rehabilitation, you need specialised equipment
One of the initiatives of the Move to Improve relief fund that brought in money was a sponsored bicycle ride from Geneva to Nice in 2011. It was organised by Stefaan Vermast, who saw first-hand the expense of providing necessary fitness equipment during his daughter Georges’ struggle to learn to ride a bike.
“For a good rehabilitation, you need specialised equipment, and the children should be able to practise at home,” he says. The bicycle ride was a success, and Move to Improve was able to buy six continuous passive motion (CPM) machines, which help to bend the children’s knees after surgery. Vermast: “For Georges, we had to pay €550 per month to have a CPM machine at home – without any refund. Now six machines are loaned out to patients for free.”
Recently, Move to Improve organised another cycling event. From 28 to 31 August, 80 cyclists, including Flanders’ minister-president Kris Peeters, rode across the provinces of Antwerp and Limburg. One of the stops was Mol, where former world champion cyclist Tom Boonen lives. Boonen is the patron of Move to Improve and has visited the centre in Pellenberg Hospital several times. With the proceeds, the fund wants to buy a tricycle that’s specially adapted for rehabilitation.
national health-care system is born
percent of salary employees contribute to social security
to 75% of healthcare costs reimbursed by mutuality