Read about Mascen, Ffion, Iolan, Elliott, Imogen and Ieuan who are just some of over 570 children who come to Bobath Children’s Therapy Centre Wales. There are an estimated 1800 children in Wales who have cerebral palsy and each year another 70 babies will be born who have cerebral palsy.
Macsen’s Story written by his Dad, Matthew Williams for his blog DisabilityTechDad
In 2014 our family had the pleasure of being part of BBC Children in Need 2014. Macsen’s story was one of the 3-minute tear-jerking videos that encourages you to donate. If you haven’t had a chance to see it or you need a good cry take a look.
When we were asked to take part we instantly said yes, not just because it’s Children in
Need, but because we wanted to represent Bobath Children’s Therapy Centre Wales and let the world know what amazing things they do every day!
Bobath Wales is a charitable organisation that helps children with cerebral palsy. The team is a collection of consultant level Physiotherapists, Occupational Therapists and Speech and Language Therapists. Every single specialist who has worked with Macsen is exceptionally knowledgeable, passionate and generally lovely. Actually that goes for the whole team, after our first visit every single therapist, fundraiser and member of the office knew Macsen and every member of our family by name.
I would describe Bobath Wales as a problem solving service. They get to know the child and the family and plan a programme and build a team around the child’s needs at that time. For us this has been mainly therapy blocks of – 10 sessions over 4 weeks. We’ve had blocks focusing on feeding, breathing, body shape, hip spasms, pain and as you’ve seencommunication and Eyegaze technology. Here are some examples of how the team has helped us:
Macsen Breathing Pre Bobath
Please visit my blog: http://disabilitytechdad.blogspot.co.uk/
On my blog there is a video that shows how Macsen’s breathing was before we visited Bobath. We had previously met many consultant doctors including an ENT surgeon who performed keyhole investigations. We were told that nothing could be done to help and we just have to wait and hope it improved.
During the first day of our first visit to Bobath Wales they identified that Macsen was not using his diaphragm correctly. They showed us how to support him to encourage him to engage his diaphragm. We did this for 20 minutes 3 times a day and within 3 days his breathing changed, his ribcage pulled in and his whole body shape changed!
Also during our first block we learned how to safely feed Macsen orally. He had recently started nasogastric feeding, but during the block we were able to prove his swallow was safe and move away from tube feeding. We were introduced to special toothpaste that doesn’t produce foam. This was revolutionary for Macsen as he struggles to cope with increased saliva and during tooth brushing he was at serious risk of lung aspiration.
Strength / tone / body shape
Physiotherapy is at the centre of everything that Bobath has done for Macsen. He is very complex due to his stiff limbs and floppy torso. Every time a Bobath therapist handles Macsen we are amazed what they can achieve. With their support he has strengthened his neck, loosened his limbs and has improved his ability and confidence in holding his head.
Throughout the last 12 months Macsen has had awful problems with pain. The pain was sobad that it was hard to straighten him and he just wanted to be rolled in a ball. This left him with a curved back, S shaped spine and shortened leg muscles (unable to straighten). The team have done an amazing job in starting to reverse this and have trained us in how to keep going. We hope this will minimise or negate the need for operations in the coming years.
Pain and Spasms
During two of Macsen’s blocks we were unable to work on the developmental areas we had hoped, due to his increasing pain and muscle spasms. The team identified this and worked on identifying the root cause of the pain and teaching us how to reduce the impact.
Advice / Training and contacts
The one thing that has always amazed me is the openness of the whole team to learn. Although every therapist has a specialism they have all developed the highest level of skill in each other’s discipline. They also welcome specialists from other organisations and other Bobath centres; we have been part of such training sessions and every single person, no matter what rank or level of experience is open to someone else’s perspective and experience. The team also ensure they have keep contact with each child’s local NHS team. They produce very detailed programmes to ensure that the child has continuity of care and that the benefit continues well beyond the block.
We also experienced the benefit of their extensive specialist network when Macsen had a very unique digestive problem. We were making slow progress, he was experiencing a lot of pain and we were constantly being told there was no one who could help us privately. Within a day of asking Bobath Wales for support they reached out to their network and a number of specialists recommended a consultant in London who was able to identify, advice and operate on the problem within weeks.
We have also had lots of emotional support from Bobath’s Family Support Coordinator who is a CP mum herself! We’ve also been to lots of fun and useful events including ice-skating, meeting assembly ministers and meeting Santa.
It’s hard to believe that Bobath Wales has helped our family in so many ways in Macsen’s short lifetime. Every child that has cerebral palsy is so very different and Bobath Wales adapts to support their specific needs. Hopefully you can see from Macsen’s story and Bobath is very much more than just Eyegaze!
Ffion was born 10 weeks premature and was in the Special Care Baby Unit for 7 weeks. Initial tests showed that Ffion had a small hole in her heart, but her paediatrician was confident that this would correct itself eventually, without the need for surgery.
Ffion’s development appeared to be normal to start with but when certain milestones were being missed, such as rolling and sitting, I began to ask why. At first I was told not to worry, that she would soon catch up and that it was because she was a ‘prem baby’. I wasn’t convinced, so I continued to push for answers.
Ffion was finally diagnosed with cerebral palsy in February 2011 when she was 14 months old. As much as it was a relief to finally have a diagnosis, it also came as a terrible shock. I had no idea how the condition would affect Ffion and what her future would hold. I had no idea what cerebral palsy was and as much as the doctor tried to explain, I wasn’t able to take in what he was saying. That day is still a blur!
Ffion was referred by her paediatrician to Bobath Wales for specialist therapy and the help that we have received has been life changing for both Ffion and me. The support and advice that I’ve been given during Ffion’s therapy sessions has made a huge difference. I now feel more positive about Ffion’s future and always focus on her abilities and not her disability.
When Ffion had her first session of Bobath therapy, she was unable to sit without support. After just an hour of intense therapy Ffion was able to sit unaided for the first time ever. As you can imagine, I was overjoyed and very emotional.
As Ffion’s therapy continues, she is getting stronger and more confident. Each therapy session brings an improvement in what she can do and she achieves something new. I am so grateful to Bobath Wales and know that every child in Wales with cerebral palsy deserves to benefit from this specialist therapy.
Our story is slightly different to that of many Bobath families in that Iolan wasn’t born with cerebral palsy and reached all the normal milestones which parents use to compare their child’s abilities, he did, however, have several congenital heart defects.
We always knew that surgery would be a necessity for Iolan if he was to survive to school age, and at 21 days he had his first keyhole heart surgery. With that out of the way Iolan thrived and he didn’t allow his condition to stop him doing anything.
It was May 2010 when things changed for us all, he had his first open heart surgery, which was to correct all of his heart defects and give us a more normal life. Unfortunately this wasn’t the case, as 4 days after his surgery, at aged 2 ½, Iolan suffered his first stroke. It affected everything, he couldn’t eat or drink, hold his head up, sit, or talk, he just looked at me, locked in his own body, with tears running down his cheeks, and there was nothing I could do to help him.
It took two months of intensive physiotherapy, and a lot of determination from Iolan to regain his previously learned skills. Unfortunately Iolan suffered serious heart failure just weeks later and was put on the transplant list. Several surgeries were needed while he was waiting, for various reasons, and during one of these, Iolan’s heart stopped. As a result Iolan suffered his 2nd stroke, in October 2010. It was only in March, after his transplant, that he started doing things for himself again. Iolan has come so far but his speech, mobility and left hand and arm have been affected by the strokes.
Iolan is a determined 4 year old but he knows that he can’t do things he used to be able to do, and that he isn’t able to do everything his friends do, which can really frustrate him at times and this leads to very difficult and often uncontrollable behaviour.
At best life is hard now, but the help and support we’ve had from everyone at Bobath Children’s Therapy Centre Wales has been amazing. Bobath therapists have shown me how I can help Iolan to do more for himself, even small things like helping to take his ‘special’ arm out of his sleeve, and Iolan has seen how he can still do some things, just in a different way. I’ve learned how we can get tasks done as a team, and how I can encourage Iolan to use both arms through play. When all else fails, I’ve also learned how I can still get routine tasks done (dressing/undressing, nappy changing etc) using distraction techniques when Iolan really doesn’t want to co-operate!
I honestly didn’t think a block of Bobath therapy could make much difference to us, but I have been proven so wrong. Most importantly to me, Iolan really enjoyed the therapy sessions and was disappointed when the block finished. We both look forward to when we can next visit Bobath and I can’t wait to see what other skills Iolan and I can learn and work on together”.
“Elliott is five years old and we first attended Bobath in December 2007. The blocks of treatment that Elliott has received during his time at Bobath has been life changing for us as a family as we have a gained an in-depth understanding of his cerebral palsy. As parents we can now help our child develop, learn basic day-to-day skills and encourage him to participate in certain everyday activities that any 5 year old may undertake naturally.
Bobath have made us feel more useful in helping Elliott and have given us specific goals to achieve. The therapists have listened to us, made time for us, corrected us, informed us and understood our difficulties in living with all the emotions that cerebral palsy presents. It is also useful to know that we can ring Bobath outside of our block of therapy for information and advice as necessary. That gives us a great feeling of support at difficult times.
During the sessions, the therapists closely observe Elliott and write a very detailed report with pictures of the therapy positions that were practised. We can then refer to this report at home and practice what we have learnt on a daily basis. The information we obtain greatly enhances our understanding of Elliott’s cerebral palsy and how we can help him.
As Elliott is growing his needs are changing and so we look forward to returning to Bobath to further assist Elliott’s development.”
“After a relatively trouble-free pregnancy the diagnosis of Imogen came as a terrible shock. When she was born Imogen was very ill for a few months. She had trouble with her blood sugar levels and liver problems but these cleared up eventually. But then we noticed that she was having trouble sitting up properly and she was struggling to hold things. Being my first baby I didn’t think much of this as I had nothing to compare it with.
We were warned by the doctor that the lack of physical development might be cerebral palsy and as the months went by I accepted that the doctor was probably right. It was difficult to come to terms with her condition but we finally accepted that this was permanent.
Thankfully we were referred to Bobath Children’s Therapy Centre Wales where Imogen began to receive therapy. The staff there have made a massive difference. Each small improvement is a mile stone, she has started to use a handful of words and is able to string them together which is very rewarding.
Imogen is continuing with Bobath therapy and her progress has been very uplifting. She is now three years old, and her speech has come on really well – she is using sentences and she has no trouble getting her opinions across! Her fine motor skills have improved and she’s getting very good at feeding herself with a spoon, and is starting to do things like threading beads onto string. She has recently completed another block of Bobath therapy, where we were working on getting dressed whilst balancing on a bench, moving her feet into a better position for balance, and starting to put weight through her arms to support herself. During the previous therapy block she really mastered leaning forward to come up to standing, and she continues to do this well.
Bobath therapy has made a huge difference to our understanding of how Imogen moves, and of what we can do to help her to develop more normal patterns of movement, achieve maximum independence, and minimise problems further down the line.”
I was diagnosed with cerebral palsy at birth after I was born very prematurely and a lack of oxygen meant that the part of my brain which controls my legs, left side and eyes (to a certain extent) was badly damaged. After being told I may never walk I was referred to Bobath by my specialists as I was told they could help me with my mobility and body movement. My first visit to Bobath at the young age of four and a half proved to be a massive success for me and allowed me to try and challenge my difficulties and become the best I possibly can be even with the difficulties of my disability.
At first the specialist staff helped me become more mobile, generally working on my back and trunk muscles to try and allow me to sit up properly and stand with better posture, such as standing up straight without knees bent and straightening shoulders. This therapy has continued for a long time now and even to the present day I still attend the Centre for regular therapy, and they have recently helped with issues such as doing up shoe laces and being able to do my own tie.
Since first attending Bobath as a toddler I have made major progress physically, academically and mentally. Without the great support from the Bobath team I would not have got half as far as where I am today. Thanks to Bobath I am much more independent, by attending the personal living skills blocks I was able to learn a range of skills such as cooking my own food, folding my clothes and doing up buttons on shirts. I would say I have also progressed physically as I now have a much better posture and can use muscles I have never used before and now walk fully independently of any aids. I am also falling over a lot less than I used to.
My time at Bobath has made me more self confident and challenged me to do some things I would never have thought were possible. It has made me more confident as I have gone on because I have seen progress through my own eyes and I think this is important, it’s not just someone telling me. Finally Bobath has also helped me academically, with the help on maths shapes, measuring space and using graphs etc which has been hugely difficult due to my perception issues. However with the help of the team I can now draw my own graphs, understand and draw shapes better which were all very important in helping me pass my maths exams, along with my other 9 GCSE’s (3-A’s, 2 -B’s and 5 -C’s).
I absolutely adore sport and it is now a big part of my life as I do Discus and Shot Putt for the Welsh Disability Athletics Team. I also play rugby and swim on a regular basis but without Bobath none of this would have been possible. They have helped me keep my body in top shape to enable me to engage in such high levels of sporting activity and to be able to train for five days a week in order to achieve highly in athletics. None of this would have happened had it not been for the great early and ongoing support from Bobath. So thanks to everyone at Bobath and keep up the good work!
Ieuan, Age 17