Spina bifida handbook: Your child's treatment team
A range of experienced health care professionals will be involved in your child's ongoing care.
They will work with you to create a treatment plan to help manage your child鈥檚 day-to-day life. This includes plans for physical activity, health management and social activities.
Treatment teams
For infants
Occupational therapists
An occupational therapist (OT) can help provide safe and enjoyable ways for your baby to play. This will help them learn to move, use their hands, explore their surroundings, develop sensory abilities, cognitive skills and learn more about themselves.
Physiotherapists
A physiotherapist will meet you and your baby after birth to assess your baby鈥檚 ability to move and position their legs. Babies with spina bifida are sometimes born with musculo-skeletal problems in their legs, which is managed by plaster casts, splinting, stretches and exercises. You will be shown how to stimulate normal motor development and position your baby to make the most of independent mobility.
Social workers
After the birth of your child, your social worker plays two main roles in supporting your child and family moving forward. These are to help you get used to your new family life having a child with a disability and to link you to relevant social support services.
For toddlers
Occupational therapists
The occupational therapist will monitor your child鈥檚 development and provide suggestions on what you can do to help your child reach their milestones. If you child has difficulties with mobilities, they may need the use of a wheelchair. The OT will work with you and your child to find the right wheelchair and teach you how to use it safely.
Physiotherapists
The physiotherapist will see your child at the outpatient spina bifida service. They will regularly monitor your child鈥檚 lower limb muscle strength, posture and motor milestones. They will also work with your family to maximise and stimulate normal gross motor development. Babies and toddlers with spina bifida can develop slower than other children and may need extra help to learn some skills.
Social workers
You do not need to raise your child on your own. There are many community services that are able to support your family and promote your child鈥檚 development. A social worker can help you access support and relevant services across different stages of your child鈥檚 life.
For pre-school and school-aged children
Occupational therapists
Before your child starts school, the occupational therapist can complete an assessment with your family and check things like your child鈥檚 hand skills, including fine motor skills and handwriting. They will assist your child to be as independent as possible with self-care tasks, such as dressing, bathing, toileting and getting ready for school.
The OT will assist with your child鈥檚 start at pre-school and school including making sure school staff are up to date with your child鈥檚 needs. They can visit the pre-school/school and make suggestions to ensure your child can access the school environment and curriculum. The OT can also advise of any special equipment your child may need in order to continue learning.
Physiotherapist
Your physiotherapist may need to visit your child鈥檚 pre-school/school to educate staff about gross motor development and how best to promote walking, independence and to check the environment is right to allow full participation in all school activities.
Social workers
Having a child with a disability can mean a lot of changes, especially when it's time to start school. The social worker is available to provide emotional support, so that you can adjust to changes at each milestone. This can be done on both an informal basis or through formal counselling sessions.
For adolescents
Occupational therapists
As your child grows and their needs change, your occupational therapist can help to make ensure they have the right equipment and support for the activities they want and need to do like getting dressed, going out with friends, participating in sports/hobbies and learning to drive. They can also support the transition to high school and beyond.
Physiotherapists
Maintaining a healthy lifestyle is important for all children and adolescents living with spina bifida. The physiotherapist can give advice about sport and fitness activities to support active living throughout all stages of your child鈥檚 life.
Social workers
The social worker is also available to provide support to your child as they grow older and face challenges related to their identity and independence.