It all works – for William

The Ottobock seating system enables William to be supported so he can be comfortable and always be close to his family.

As Suzanne awaited the arrival of her third child just over sixteen years ago, she felt positive and excited for herself and her family. Despite her son William’s straightforward arrival, the experienced mother soon became worried about him; “I just felt like something wasn’t quite right” said Suzanne.

After a range of tests, when William was three months old, she was shocked to hear that William had a range of medical issues. She said; “You go into hospital with your child and you come out with the same child – but also with a diagnosis. When you’re in hospital, there is plenty of support and advice to hand, then you come home – then it hits you and you feel you just don’t know what to do! It takes years of talking and listening to people and taking their advice. Eventually you rely on your own day to day experience to build up your confidence. It feels like it takes years to get to grips.”

Suzanne explained that there are different things to contend with over the passage of time, both from a physical and emotional perspective: “As he gets bigger, you don’t know if the condition will get worse, but you know as William grows it becomes harder as everything is on a bigger scale and mum gets older.”

William is now sixteen years old and is fully supported by his mum Suzanne with the additional help of Sandra, Suzanne’s friend, who helps with William’s care during the week. Sandra is also William’s PA when he is able to go to school. This arrangement suits William well, as he has consistent support from those who know him the best.

William has much to contend with; he breathes through a tracheostomy, he is blind, only able to respond to changes in light, he has severe epilepsy, he is not able to verbally communicate, he has a curvature of the spine (scoliosis) and he is immobile with limited active movement. In addition to this, his knee is dislocated and he has a degree of hip dislocation. He is not able to swallow so he receives nourishment through a tube into his tummy (PEG fed).

But despite all of these issues, William has a full life with the support of his mum and extended family, as Suzanne has determination and a positive attitude with a focus on giving William the best time he is able to experience.

In order to support his care and safety needs, Suzanne has had to make adjustments and adaptations within their home, including adding hoists, a profiling bed and a through floor lift, all of which are important for William. However the most important piece of equipment is the Ottobock seating system as this enables William to be supported so he can be comfortable and always be close to his family. Suzanne said, “It ticks every box, the seating system is everything for William”.

The seating system was provided following careful discussion about what mum wanted for William in terms of practical support. The therapist at their local Wheelchair Service also helped Suzanne understand the need for a seating system for William and what the long term benefits would be.

A physical examination of William’s shape and limb movement took place as the first element of the assessment for William’s Ottobock seating system, as well as a discussion about the most important things to incorporate. Suzanne said; “They listened to you at the assessment, all were able to have input into the assessment and provide the requirements for the seating system and it’s fantastic.” An example of this is where Suzanne advised of the importance of William’s arms being kept supported, as William would move them out to the side a lot which made it difficult to keep him safe. Ottobock and the Wheelchair Service clinicians listened to this and ensured there was additional support around his shoulder girdle to bring his arms into a forward position. Ottobock was also able to build in arm supports down the side of the seating system to provide the necessary support for William’s arms when at rest. This means his arms are supported, yet he can still have the freedom to move his arms. “All the support William needs is in this system, but it doesn’t look like it when you look at William sitting in it. – You see William, not the chair.” Suzanne went onto say, “I have people in the street come up to me and ask me about William’s seating system, even in the local shopping centre as they can see it looks comfortable for William, it’s got to look good for William.” William is now able to participate in a range of activities. He goes roller skating with his mum, Suzanne, who pushes William round the roller skating rink in his wheelchair and Ottobock seating system. William enjoys this, as he can detect the movement which provides him with sensory feedback.

They love going for walks, either in the local neighbourhood or shopping. He also loves going to the local Zoo where he can hear the noises of the animals, Suzanne says his favourite animals are the giraffes, elephan ts and the lions. William loves being outside, so the Ottobock seating system enables him to participate in activities with his mum and Sandra. They have an adapted vehicle which enables William to be transported in the community, so this opens up a wider range of experiences for William. Suzanne feels that even though the ride in the vehicle can be bumpy, the foam used by Ottobock to construct the seating system provides sufficient dynamic support to enable William to remain comfortable during the journey and reduce the likelihood of seizures occurring. Ottobock has recently revisited William as like most sixteen year olds, he had grown.

This may have meant that a new seating system needed to be provided, but for Ottobock this was not an issue. As William had not changed in terms of his shape and other needs since the seating system was first provided, it was determined that the only change needed was to increase the height of the back rest. So Ottobock manufactured an additional element to fit under the lower edge of the back rest in order to relocate the back rest shape into the correct position for William. This was a practical and cost effective way of ensuring William’s Ottobock seating system remained clinically and practically appropriate for William, until his next growth spurt that is.

Due to William’s complex needs, there are some risks for his care that need careful monitoring. The first risk is pressure damage to his skin. As William is not able to let anybody know if he is in pain or discomfort, combined with his immobility, there is always a high risk he might develop pressureulcers. William does not have this problem due to a combination of the care he receives from his mum who carefully checks his skin regularly and the foam used in the Ottobock seating system, so William is able to use the system for prolonged periods of time.

The second risk is contracting chest infections. This is more likely to occur due to William’s lack of overall movement combined with his breathing difficulties. When William does have a chest infection, it is impossible for him to lay down in his bed due to his airways becoming blocked. Suzanne then uses the Ottobock seating system throughout the night as well as the day, as a degree of seat tilt can be applied and William can be supported in terms of his breathing and airways by the Ottobock seating system. In this way hospital admissions can be avoided for William as his condition can be managed at home.

Part of any seating system is support for the head. Ottobock has provided a wide, gently curved headrest for William which provides the necessary support as William is not able to hold his head independently. Attention was also paid to the angle of the headrest; too far back and this would have a negative impact on his breathing, too far forward – his head would fall onto his chest. So the head rest has been fitted at the correct angle for William for his head to be supported and allow him to move his head from side to side “Ottobock was fantastic, he can move his head and see the lights and he can also turn his head to sound, so he is not confined or restricted in the head rest – again you can see William’s head and face rather than a restrictive headrest,” said his mum.

Suzanne and her son William are leading a busy and active life thanks to a range of support, from Sandra to the Community Nurses who visit regularly. But in Suzanne’s eyes, the Ottobock seating system is pivotal in providing support for William that then enables her to provide the best ongoing care possible. They are certainly a team, but for Suzanne, it’s all about William.

Related systems