Spinal cord injury

If the cervical spine (neck area), is injured, the result will likely be loss of movement and sensation in your arms, legs as well as weakness of your chest and tummy muscles. It can also affect the ability to breathe on your own.

The common term used by medical professionals for this is ‘tetraplegia’ (it used to be called quadriplegia).

If the thoracic spine (upper and middle part of the back), is injured, the arms and hands should continue to work normally, but the legs lose movement and sensation, as well as sometimes the tummy muscles. This is referred to as paraplegia.

The severity of thoracic spinal cord injuries varies depending on how high up the thoracic cord is damaged. The injury may cause minor issues with the ability to move or feeling in the lower limbs, or can lead to total paralysis from the waist down.

If the lumbar or sacral spine (lowest parts of the back) are injured, it can cause paralysis and loss of function in the legs. This is also referred to as paraplegia. The severity of lumbar and sacral spinal cord injuries varies. The injury may also cause loss of nerve and muscle control to the bladder, bowel, and sexual organs.

There is also something called ‘cauda equina syndrome’ which means damage to the lower end of the spinal cord may cause foot drop and altered sensation in the lower limbs.

Sheffield Children’s Hospital might be the first hospital you came to after your spinal cord injury or you may have been transferred here from another hospital for our specialist services. You will stay here until you are either ready to go home or to be transferred nearer to home or to another rehabilitation centre. You may be on an orthopaedic, neurosurgical or medical ward depending on the type of spinal cord injury you have. In some cases you may need to be on Intensive Care or High Dependency in the early part of your hospital stay.

The early management of your injury will depend on the cause and severity. If you have not had a scan you are likely to need an MRI scan (a special scan that takes detailed pictures of your spinal cord). You need to lie very still for this in a noisy tube. Some children find this is too difficult so have a short anaesthetic to put them to sleep so the pictures can be taken. Even if you have had a scan in another hospital we may want to repeat this or do a different type of scan to help us better understand your injury.

If you have had an accident or there is something pressing on your spinal cord you may need an operation relieve pressure on your spinal cord or to stabilise the bones in your spine. If you have a condition called ‘transverse myelitis’ you usually need treatment with steroids through a drip for a few days, and if you have had a spinal cord stroke you may need to take aspirin or other medication to thin the blood. Antibiotics might be part of the treatment either to treat or prevent an infection.

Depending on your level of injury you may need help with your breathing. This might be through specialist chest exercises and physiotherapy, oxygen therapy or ventilator support.

To begin with, after a spinal cord injury it can also be hard to predict how your bladder and bowel will be affected so we will usually put in a catheter to make sure your bladder drains safely and you may need medicines to help you go for a poo regularly.

Most people with a spinal cord injury need to spend time on bed rest and the length of this can vary from a few days to months.

Whilst this can be hard to deal with, this time allows the cord to heal as much as it can and is good for your long term recovery. While on bed rest the nurses, support workers and physiotherapists will help with turning and moving you so you do not get too uncomfortable and to prevent your skin getting sore. When you do start getting moving this is usually done slowly and gradually so your body can get used to it.

It can feel very strange after a spinal cord injury if you cannot move yourself like you used to. You may find you do not have normal sensation, or that you have funny pains. This can be frightening, and so the staff and your family will do all they can to explain what they are doing. We are always happy to be asked questions.

Staying occupied whilst lying on your back can be a bit tricky, but we have lots of people to help with this, including play specialists, teachers, nurses, physiotherapists and occupational therapists.

While you are on bed rest, the play specialist will help to find activities and games for you to do. We even have a projector so you can watch your favourite DVD’s on the ceiling! They will also work with the physiotherapists and occupational therapists in finding activities that will help with keeping your body moving.

If you are completely paralysed (unable to move yourself) the physiotherapist will perform passive movements to keep your joints loose and maintain muscle length, but if you are able to contract any of your muscles you will be encouraged to do this as much as possible. Your parents and family will be shown how to carry out these exercises so that you can practice them. You may need to have splints on your feet or hands to make sure they are in a good position.

If your breathing has been affected you may see a respiratory physiotherapist. They will encourage you to take deep breaths and play blowing games to keep your chest clear. They may use equipment such as a cough assist machine to help you cough to clear any phlegm.

After a spinal cord injury you are at risk of developing pressure sores. This is because your sensation is reduced and you are less able to move from different positions. This is why it is important to move regularly, known as pressure relief. The nursing staff will also make sure you are turned regularly.

Once the doctors are happy your condition is stable, you will be able to start getting out of bed. At first you are likely to be hoisted out of bed but where possible you will be taught to do this more independently using other equipment if appropriate.

Most children will need to use a wheelchair, at least initially. After being fully supported on the bed whilst on bed rest, the wheelchair can seem very uncomfortable at first, and sitting can be very tiring. It is important to see that getting out of bed and gradually increasing time sitting is an exercise in itself. This can be very challenging, and you may find it takes some time to adjust to being upright again.

You will start to meet some other people in the rehabilitation team who will help you with other aspects of your spinal cord injury. This may include:

• how to empty your bladder with an intermittent catheter
• how to manage your bowels with medicine or suppositories (a medicine you give in the bottom)
• medicines to help your muscle tone (after a spinal cord injury your arms and legs can initially be very floppy but they usually stiffen up and this can be painful or cause problems as you try to get more mobile)
• learning about Autonomic Dysreflexia (this is rare in children after a spinal cord injury but we will need to teach you about it so you can try and prevent it and know what to do if it happens)
• the importance of checking your skin

The neurology doctors will review you most days and will explain to you and your family about your specific injury, treatment options including medication and your likely long-term outcome.

The spinal rehabilitation doctor will become your main doctor once you are stable and have had any surgery or medical treatment that is needed.  They work with the rest of the multidisciplinary team and will be involved in planning your discharge home once you are ready.  The spinal rehabilitation doctor does a weekly ward round where you will be able to talk about progress and ask any questions. If you would like to see the doctor at another time, ask the nurse looking after you who will help to arrange this.

The spinal rehabilitation doctor will refer you to any doctors who will need to see you nearer your home when you are discharged from hospital (community paediatricians).

There are also spinal injury doctors you might meet. They work in the adult Spinal Cord Injury unit but have an interest in children’s spinal cord injury and provide some support to our service here at Sheffield Children’s Hospital.

Physiotherapy and occupational therapy in the early stages following a spinal cord injury help you with:

• giving chest or respiratory care and support with your breathing if required
• maximising muscle strength and maintaining range of movement in the joints and muscle length
• teaching you the best ways to be as independent as possible including bed mobility and getting dressed
• working on your sitting balance and learning to move around
• learning how to transfer in and out of, and use your wheelchair
• learning about pressure relief to avoid pressure sores

After an initial assessment, therapists will assist you in identifying realistic goals to work towards. It is important to realise that some of these goals may not be achievable whilst you are in hospital, but you can continue to work towards them once home.

The nursing team consists of registered nurses, support workers, nurse associates, specialist nurses, and sisters or charge nurses.

They will work with you to manage your injury, this may include:

• managing your medication
• help with eating
• skin and hygiene support
• bladder and bowel management
• supporting you to get out of bed

There are doctors and nurses as part of the continence and urology team and they will help advise and support with management of your bladder and bowel, alongside the ward nurses and spinal injury doctors. The urology nurses will teach you and your family how to do intermittent catheterisation to help empty your bladder if needed.

The speech and language therapists work with eating and drinking and with communication. If your injury is making it uncomfortable when you are eating or drinking, or your breathing is affecting your speech, then one of the team will come and help you with this.

Being in hospital can be a frightening time for children and young people. It can also be boring when you are on bed rest, or in hospital for a long time. Our team of play specialists will work closely with the ward staff and rest of the Neurorehabilitation Team to plan and provide age appropriate play and distraction activities that will hopefully help you relax during your time with us. Some of the things they help with are provision of toys, games and computers, organising art projects and displays, and sometimes even baking activities. They are also a helpful team to talk through your worries and anxieties with. They aim to make the environment as fun and welcoming as possible for all children.

The Children’s Hospital teaching team are a Sheffield City Council service based in the hospital and are a team of fully qualified teaching professionals. They will provide support and teaching while you are in hospital and will link closely with your school to make sure you are covering appropriate topics of work. The amount of work you are able to do may only be very small initially, and although you will meet the hospital teachers early on in your stay, it may simply be for short sessions where they read with you or do some simple games and puzzles.

Teaching sessions will gradually become part of your daily timetable. The teachers will work closely with other members of the neurorehabilitation team often doing joint sessions together with you. The teachers will also help with planning your discharge and getting you back to school, alongside your school, and will support with any applications for addition help and support, such as Education, Health and Care Plans (EHCP).

The spinal cord injury team has a psychologist who is available to support you and your family with dealing with the emotions that can occur after a spinal cord injury. There are lots of things they can help you with, such as:

• learning ways to cope with distressing treatments and procedures
• managing pain
• adjusting to the diagnosis of a spinal cord injury
• talking through fears and worries about the future
• helping with symptoms that might indicate post traumatic stress disorder

They will work with the whole family and can also point you in the direction of other avenues of support. If needed, we can also access the hospital liaison psychiatry team for more severe problems you may be having with your mental and emotional health.

The major trauma and rehabilitation coordinators work with children and their families who have been admitted to Sheffield Children’s Hospital after a major injury or illness resulting in difficulties which need the support from the multidisciplinary Neuro-Rehabilitation Team. This includes children with a spinal cord injury.

They aim to act as a key worker for children and families. This means supporting you during your stay at Sheffield Children’s Hospital, and providing advice about what is happening along the rehabilitation pathway. If needed we can refer you to other services or charities to help you. This may include the Back Up spinal injuries charity, or the Major Trauma Support Partnership who can provide financial, benefits advice or legal advice.

Staying in hospital can be expensive. Our hospital has introduced a range of schemes to help reduce this burden. This includes reduced cost meals in the canteen, or microwave meals on the ward, toiletries and parking vouchers. Please ask the ward staff if you have not been offered these.

If you have had a spinal cord injury you may be entitled to benefits such as Disability Living Allowance and Carers Allowance, or have a Blue Badge for parking.

The Major Trauma Support Partnership can offer advice and support regarding benefits or other financial difficulties you may be experiencing.  This service is available for families where a child has had a traumatic spinal cord injury. Referrals can be made via any member of the team, or telephone 0330 043 6769, or email scn-tr.sch.mtsp-info@nhs.net.

Alternatively financial advice can be obtained from your local Citizen’s Advice or the Spinal Injuries Association.

If your child has been involved in an accident resulting in a spinal cord injury, free legal advice can be obtained from the Major Trauma Support Partnership. If you are interested we can arrange for someone from the service to visit you on the ward. Telephone on 0330 043 6769, or email scn-tr.sch.mtsp-info@nhs.net

Other sources of legal advice can be accessed at:

Law Society

APIL

AvMA

While you are in hospital we will talk to your school and involve them in any discharge planning meetings. The outreach rehabilitation coordinator will continue to liaise with schools once you are discharged to support return to education.

Back Up Spinal Injuries charity has specific education advisers who will be able to help you and your child’s school to have the right support in place. They can also advice on the Education Health Care Plan process if required.

It is important to keep as active as possible following a spinal cord injury, especially if you are a wheelchair user. We realise that sometimes it may not be possible to go back to some activities which you used to enjoy, but there are plenty of opportunities to try out new sports.

Have a look at the following websites and perhaps give something new a go:

The Steelers on 07972 774250

Every Body Moves (Paralympics GB) on 020 3965 4124

WheelPower on 01296 395995

Climbing For All on 07703 462 715

There are a number of Spinal Injury Charities that have lots of useful resources covering many topics including holidays, sports, wheelchair skills courses, relationships, sex and fertility:

Back Up

Has a dedicated service for children and young people affected by a spinal cord injury. Provides peer mentoring for young people and parents, education advice and offer wheelchair training, residential holidays and activities. Telephone on 0208 875 1805.

Spinal Injuries Association

Telephone on 0800 980 0501.

Aspire

Telephone on 0208 954 5759.