This information has been written by Shine and NHS physiotherapists to help parents and anyone working with a young child with this condition. Encouraging and supporting independent mobility in the early years is important for the development of physical, cognitive and social skills.
Children born with spina bifida will have damage to the nerves originating in the spinal cord.
The degree of damage varies and each child is unique, but the level of the lesion (affected area) will relate to potential difficulties they may have. They may also have hydrocephalus which may require treating, often with a shunt.
Paediatric physiotherapists work with children to assess and treat mobility and movement difficulties with the aim of promoting independence. They often work closely with other professionals such as occupational therapists, orthotists and wheelchair services.
As spina bifida particularly affects the hips, legs and feet, your baby should be referred to a children's physiotherapist soon after birth for assessment and then be regularly managed and reassessed as and when needed.
Physiotherapists and occupational therapists often work together to encourage independent transfers, standing and walking where possible. They do this by working with parents to incorporate exercise through play. They may also use equipment to help achieve this.
The aim of therapy intervention and equipment is to enable your child to experience the same movement experiences as their peers around the same developmental milestones.
Research has shown that if children with physical difficulties are given opportunities for independent mobility, at an early age, this has a positive impact on not only their milestones for physical development, but also of their visual, language, cognitive and social development.
Babies and children learn by responding to their environment and how to move within it. In children with impairments, sometimes extra support is needed to encourage this. It is important for babies to initiate movement and to motivate themselves in play. All children learn differently. Some babies and children may need encouragement to participate in activities. They may not naturally initiate play, or be unable to access play due to their unique difficulties. A paediatric physiotherapist or occupational therapist should be able to offer advice on this.
Sensation, including touch, taste, smell, vision and movement all help to form a child's understanding of the world. Difficulties in processing this information, either due to their medical condition or early experiences, can mean that for some children sensation is a negative experience. Loud noise, and lots of stimulation can be difficult for some children with spina bifida and hydrocephalus. Facilitating appropriate sensory experience through play and movement can help your child's response to sensory stimulation. If your child has difficulties in this area, do get some advice from your health professionals or contact us at Shine.
Whilst your child is developing through play, interaction with you and therapy sessions, it is helpful to think about opportunities for independent mobility in everyday activities, such as rolling on a changing mat every nappy change, or placing toys slightly out of reach.
Your relationship with your child is important for their developmental wellbeing, so it’s important to find fun opportunities for you both to move and explore.
Your child may benefit from attending a preschool or nursery to help social interaction and access a wide variety of sensory and developmental play. If your child gets disability living allowance (DLA), or has an education and health plan (EHP) then they should be eligible for free hours from the age of 2.
A variety of equipment is available to assist your child to move around various environments. Any equipment used should be assessed by a therapist or specialist. It should help your child to be as independent as possible and allow them to play and have fun.
Children with spina bifida may use a variety of methods and equipment to get around. They may use a walking frame at preschool, or going to the park but crawl at home. If walking is difficult then providing age appropriate opportunities to use a self propelling or electric wheelchair can bring freedom to explore and learn.
Speak to your therapist about this if it is appropriate for your child. Independent mobility should be considered at the earliest opportunity as evidence suggests that a child's ability to independently explore their environment and interact with peers aids developmental progress. We would be planning to achieve this from the age of 2½ years, as their peers will be independently mobile by this time.
The following sections offer some practical advice from birth up to the age of 3 years. Please remember that every child is unique and they will all develop at different times and in their own ways.
At this stage, your baby needs to learn about the world around them and how to move in it. In the early days they will be developing skills to hold up their head, roll over and move on the floor and sit up. Not all babies will achieve this at this time, but they should all work towards these milestones.
Your baby may have had surgery early on in their life, possibly to close their back, or to insert a shunt to treat hydrocephalus. You may have to nurse them in a different way, however it is still important for your baby to experience different positions and begin to move.
You should have been referred to your community physiotherapist soon after discharge and they should see your child in their first month. They should carry out an assessment and provide practical advice on positioning and stretches to maintain range of movement (ROM) where required. They may also refer onto other services such as orthotics for splinting if needed, or occupational therapy which looks at independence in everyday activities.
Bath time can be great fun and can allow real freedom for a child with reduced mobility. Playing games involving legs and feet is particularly important for babies with spina bifida to help with body awareness as they may not be able to feel them.
Most high street stores have supportive bath seats.
As your baby gets older an occupational therapist should be able to provide bathing equipment if it is still required.
At around 6-8 months, babies should be beginning to learn to sit, and given plenty of opportunities to do so.
Sitting is an important milestone. It helps the visual centre of the brain start to organise itself and sitting allows for major changes in arm movement and control to occur as well as being important in language acquisition and early socialisation skills as they can see more of what is going on around them.
If sitting is difficult, your physiotherapist and occupational therapist should be able to advise and work with you on achieving this.
Motivate your baby to move and explore their surroundings.
Opportunity to play in lying, especially on their tummy. Helps muscles to develop.
Vary the toys you use. Bright colours to hold their attention.
Encourage your baby to do as much as they can independently, placing toys just out of their reach.
Play should be fun for you and your baby.
Look at the things your baby enjoys playing with and use them to motivate them to move.
Attention, what does your baby take notice of, noisy toys, interactive books, mirrors. Use those toys, especially during tummy time.
Your time with your baby should be fun. Watch your baby during play activities so you can see you're both enjoying it.
As they get older your child will want to start moving to explore their world. They may start crawling and pulling themselves up into standing. Children with spina bifida may need some support in order to do this.
Children need to learn and be encouraged to move from one position to another. This may be more difficult for a child with altered movement and sensation in their limbs, although children are remarkably resourceful and if you motivate them by placing something they really want just out of reach they may well surprise you!
Getting advice and ideas from your physiotherapist would be very useful at this point to encourage early mobility which we know has so many benefits.
Crawling where possible is an important skill to master and allows your child to begin to independently explore their environment. Tummy time will have prepared them for this by helping to strengthen arms and back and get them used to this position.
If your child has limited control of their lower limbs, equipment such as a scooter board or Firefly Scoot can allow them to explore and use their arms to reach and carry toys.
If you have slippery laminate or wooden floors, this can make trying to move and crawl frustrating for your child. For others, it may make it easier to move. Try and place them on a rug or carpeted area. Dungarees are good to crawl in as they reduce risk of carpet burns and their trousers being left behind.
There is evidence that children with physical disabilities who are encouraged to stand, transfer and walk earlier on in life often have more independence in later years. Your child should be encouraged to start taking weight through their legs at the same stage as their peers, from approximately 8-9 months.
Standing and walking (where possible) are important for:
It is recommended that standing should happen for 45-60 minutes a day for maintaining ROM, but for 90 mins a day (which can include walking) for bone density. This should happen 5 days a week.
Standing, transfers and weightbearing are important for all children and even if your child's legs are affected and they cannot stand on their own, they should be assisted to stand with equipment if needed.
One of the easiest ways to encourage your child to stand is to place them against a sofa and position a favourite toy just out of reach. You may need to provide support.
The ability to stand and move from one position to another is an important skill to acquire and will help with independence in later life, even if walking is not possible. Your physio will be able to advise on how to practice this skill.
Where possible, walking is to be encouraged due to the health benefits it gives. Equipment may be used to support them in their walking. It often requires more energy to walk than a fully ambulant child, so there may be times you want to look at other forms of mobility to aid independence and prevent fatigue.
Some children with spina bifida, especially with a high lumbar or thoracic lesion may not be able to achieve independent walking and will use a wheelchair.
Whilst it is important for a variety of reasons to encourage standing and walking in children, we know that many children who can walk with orthosis and equipment may also choose to use a wheelchair at times for independent mobility, especially as they get older. Your physio or occupational therapist can refer you to wheelchair services.
Some parents use charities to help provide wheelchairs, especially if you areconsidering an electric wheelchair. It is vital that the chair is correctly set up for your child, that they know how to use it, and to protect the arms and shoulders from overuse. A number of charities offer wheelchair skills training (see below).
Independent mobility should be considered at the earliest opportunity. We believe a child should be able to have independent mobility where possible at the same age as their peers. If your child would benefit from a wheelchair to achieve this, we recommend provision around the age of 2½.
Suzanne Lawrence, Senior Paediatric Physiotherapist, Leicestershire Partnership NHS Trust, Rachel Downey, Specialist Occupational Therapist, Manchester Children's Hospital, Kathy Allen, Occupational Therapy Development Officer, Shine
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