Myelomeningocoele causes a child’s brain and spine to develop in a different way to other children. When you first meet with doctors and nurses they may refer to your child’s MRI level of lesion. This simply refers to the location of the lesion on your child’s spine when viewed on scans. We use this term at the antenatal consult to predict how your child may be when they are born.
After your baby is born, we can observe and examine how your child moves. This gives us more information about how their myelomeningocoele may is affecting them. When we see which muscles are moving we can determine your baby’s “functional level”: this is a description of which muscles are moving well and is more helpful in predicting long term outcomes than the MRI level. The functional level assessment is more accurate from 6 months onwards.
One of the main questions parents ask the Spina Bifida Team is “Will my child walk?” Assessment of functional level helps us answer this question, but walking is affected by more factors than just the functional level. These include the presence of hydrocephalus and postural alignment (how your child’s bones and muscles are positioned).
If the nerves to your child’s muscle do not work they cannot be repaired and will have permanent weakness.
Based on information gathered in Temple Street we have analysed children’s MRI levels of lesion. This data is based on 10 year of information gathered in Temple Street Children’s University Hospital. This is as accurate as we can be at this stage of development, however each child is an individual and may present different than their MRI level.
It is important to note that children with Spina Bifida (myelomeningocoele) who walk may require additional supports such as leg splints e.g. (Ankle and foot orthoses AFOs). Please refer to the next page for further information on how the functional level of lesion may affect your child.
| MRI/ Functional level of lesion
|
Will my child walk?
|
Will my child require a shunt? |
Will my child have bowel or bladder difficulties?
BOWEL
|
| Thoracic level
T1 to T12 |
All children are use wheelchair users | 9 out of 10 require a shunt | All children will be affected |
| Lumbar level L1 and L2 | All children are wheelchair users | 10 out of 10 require a shunt | All children will be affected |
| Lumber level L3 | 8 out of 10 children are wheelchair users | 9 out of 10 require a shunt | All children |
| Lumbar level L4 | 5 out of 10 children walk | 7 out of 10 require a shunt | All children |
| Lumbar Level L5 | 3 out of 4 children walk | 7 out of 10 require a shunt | All children |
| Sacral | 9 out of 10 children walk | 6 out of 10 require a shunt | All Children |
How will the location of my child’s Myelomeningocoele affect him/her?
Your child’s functional level of lesion will be assessed on an on-going basis by your child’s Physiotherapist, Orthopaedic surgeon and Paediatrician. It is important to note that your child’s functional level may deteriorate. Your child’s spine has 33 bones called vertebrae which can are divided into different regions know as cervical, thoracic, lumbar and sacral.
If your child’s functional level is located at the thoracic level your child may:
- Be unable to stand up without support.
- Need a wheelchair to move around.
- Have orthopaedic needs which may include spinal curves e.g. scoliosis, hip dislocations, knee contractures, talipes (club feet).
- Require help to do activities such as dressing and bathing.
- Require help in school to do everyday activities e.g. toileting.
If your child’s functional level is located at Lumbar levels (L1, L2, L3) your child may:
- Require supports to stand up e.g. frame, crutches, orthoses (foot, knee and or hip supports)
- Need a wheelchair to move around
- Have orthopaedic needs which may include spinal curves e.g. scoliosis, hip dislocations, knee contractures, talipes (club feet)
- Require help to do activities such as dressing and bathing.
- Require help in school to do everyday activities e.g. toileting.
If your child’s functional level is located at Lumbar levels (L4, L5) your child may:
- Require supports to walk including orthoses e.g. ankle and knee supports.
- Need a wheelchair for long distances due to fatigue.
- Have orthopaedic needs which may include hip dislocations, knee contractures, talipes (club feet).
- Require some assistance to do activities such as dressing and bathing.
- Require help in school to do everyday activities e.g. toileting.
If your child’s functional level is located at Sacral levels (S1, S2) your child may:
- Stand without supports.
- Walk without supports.
- Have orthopaedic needs which may include toes and feet problems.
The aims of intervention are to ensure that your child reaches their full potential in participating in everyday age appropriate tasks.