The orthotic management of spina bifida children
present status—future goals
N . C. C A R R O L L
Hospital for Sick Children, Toronto
All spina bifida children should have functional
goals established for t h e m . These goals will vary
with t h e severity of the m o t o r a n d sensory
deficit, a n d with t h e child's developmental
threshold. I n establishing such goals it is con­
venient t o g r o u p the children according t o
neurosegmental level: thoracic, u p p e r l u m b a r ,
lower l u m b a r , a n d sacral.
Children with spina bifida tend to be delayed
in their developmental l a n d m a r k s : (a) h e a d
control, (b) creeping, a n d (c) a m b u l a t i o n
(National A c a d e m y of Sciences, 1973). They
should be reared in a milieu which is intellect­
ually a n d physically challenging. Every effort
should be m a d e t o " n o r m a l i z e " their lifestyle.
These children benefit from a sense of achieve­
ment. Mobility is essential if the child is going
t o attain social m a t u r a t i o n a n d educational,
vocational a n d avocational goals. G o a l -
orientated p r o g r a m m i n g requires a co-ordinated
t e a m effort, with the patient the most i m p o r t a n t
m e m b e r of the team.
F r o m birth t o h e a d control, the goals a r e t o
correct deformities, avoid contractures, en­
courage development t h r o u g h mobility a n d
protect anaesthetic skin.
T h e goals from the time of head control t o
creeping are t o achieve a sitting balance, prevent
deformities, protect anaesthetic skin, encourage
the use of h a n d s bilaterally, improve eye-hand
co-ordination, improve upper-limb strength,
improve interaction with a b r o a d e n e d environ­
ment a n d improve mobility.
A s regards ambulation, spina bifida children
can b e classified by functional level into n o n -
a m b u l a t o r s , nonfunctional a m b u l a t o r s , house­
hold a m b u l a t o r s a n d c o m m u n i t y a m b u l a t o r s
(Hoffer et al., 1973).
" N o n a m b u l a t o r s — T h e s e patients a r e wheel­
chair-bound b u t usually can transfer from
chair t o bed.
"Nonfunctional a m b u l a t o r s — W a l k i n g for
these patients is a therapy session at h o m e , in
school o r in t h e hospital. Afterwards they
use their wheelchairs t o get from place t o
place t o satisfy all their needs for transport­
ation.
" H o u s e h o l d ambulators—These patients walk
only indoors a n d with a p p a r a t u s . They a r e
able t o get in a n d o u t of their chair a n d bed
with little if any assistance. T h e y m a y use t h e
wheelchair for s o m e i n d o o r activities a t h o m e
a n d school, a n d for all activities in t h e
community.
" C o m m u n i t y a m b u l a t o r s — T h e s e patients
walk i n d o o r s a n d o u t d o o r s for most of their
activities a n d m a y need crutches o r braces, o r
b o t h . They use a wheelchair only for long
trips o u t of t h e c o m m u n i t y . "
I n a study of 68 spina bifida children aged 12
a n d over, D e Souza a n d Carroll (1974), found
that the eventual a m b u l a t o r y status w a s
primarily dependent o n (1) the neurosegmental
level of the lesion, (2) the m o t o r power within
a given neurosegmental level, (3) the extent a n d
degree of the orthopaedic deformities, (4) age
a n d stature, (5) t h e design a n d effectiveness of
the orthosis, (6) intelligence, (7) motivation,
(8) spasticity, (9) obesity, a n d (10) possibly sex.
T h e goals for a child with a thoracic n e u r o ­
segmental level w h o has progressed t o t h e p o i n t
where he is ready t o a m b u l a t e are (1) g o o d
sitting balance, (2) a m b u l a t i o n at least d u r i n g
first decade, (3) ability t o d o transfers, (4)
wheelchair propulsion, (5) self-care, (6) social
acceptability, (7) schooling, (8) access t o environ­
ment. A s a n adult, the patient should learn t o
drive a n automobile.
 T h e goals for a child with a n upper, l u m b a r ,
neurosegmental level w h o h a s progressed t o t h e
point where h e is ready t o a m b u l a t e a r e similar
t o t h e goals for a child with a thoracic neuro­
segmental level. However, o n e would h o p e that
the child with t h e upper, l u m b a r , n e u r o ­
segmental level would learn t o b e a household
ambulator.
O n e of the goals for a child with a lower,
l u m b a r , neurosegmental level is t o m a k e h i m
a c o m m u n i t y a m b u l a t o r . H e should b e capable
of crutchless standing a n d self-care; h e should
be able t o go t o a regular school; a n d h e
should b e motivated t o b e self-reliant.
T h e child with a sacral level, neurosegmental
lesion should b e c o m e a c o m m u n i t y walker with
minimal bracing.
T h e spina bifida p r o g r a m m e at the Ontario
Centre for Crippled Children includes a n
information class for t h e parents of pre­
schoolers, a multidisciplinary clinic, a n d an
orthotic clinic. I n t h e information g r o u p
parents a r e taught h o w t o avoid contractures,
t o encourage development t h r o u g h mobility,
and to protect anaesthetic skin. T h e spina
bifida clinic is conducted with a neurosurgeon,
a n orthopaedist, a n d a urologist in attendance.
T h e orthotic clinic is attended by a n o r t h o ­
paedic surgeon, a n orthotist, orthotic tech­
nicians, physiotherapist, occupational therapists,
nurses, a n d social workers. A child is presented
at the orthotic clinic when he requires orthoses
t o help h i m achieve t h e next developmental
threshold. Most of t h e children a r e 10 t o 18
m o n t h s old. T h e child's specific functional loss
is determined, goals a r e established for t h e
present a n d future, a n d decisions a r e m a d e as
t o t h e role of physiotherapy, surgery a n d
orthoses in his p r o g r a m m e .
Fig. 1. Caster Cart.
A child with a thoracic or upper l u m b a r lesion
m a y have difficulty in dragging himself from
point A t o point B . W e frequently prescribe a
prebracing mobility a i d called a Caster C a r t
(Fig. 1) for such a child (Carroll, 1974). T h e
Caster C a r t m a k e s it easy for t h e child t o m o v e
a b o u t a n d explore his environment. H e learns
t o use his h a n d s t o m a n i p u l a t e t h e wheels. H i s
skin is protected.
W h e n a child with a thoracic o r upper,
l u m b a r , neurosegmental level demonstrates
that h e is frustrated with sitting a n d that h e
wants t o stand, we prescribe a Standing Brace
as shown in Figure 2 (Carroll, 1974). This is a n
Fig. 2. Standing Brace.
inexpensive prefabricated orthosis which gets a
patient upright without delay. It is m a d e of a
tubular frame t o which p a r t s a r e riveted. T h e
fitting can be completed in u n d e r t w o h o u r s a n d
the patient c a n stand without crutches. H e can
m o v e without crutches by pivoting. H e can use
crutches t o achieve a swing-to o r swing-through
gait. A s a preliminary device it enables t h e
clinic t e a m t o assess t h e child in standing.
W e believe that these children should stand
a n d walk even if later in life they will give u p
their orthoses for wheelchairs. W h e n they stand,
their horizons are broadened, their lower limbs
are less osteoporotic a n d they have fewer
fractures, their bladders drain better, bowel
function is improved a n d their cardiovascular
system is stimulated by t h e increased physical
activity. Upper-limb strength is increased.
Some of t h e children with a n upper, lumbar,
neurosegmental level have been fitted with a
Reciprocating G a i t Brace (Carroll, 1974). This
device, by m e a n s of a gearbox, harnesses the
power of hip flexors on one side t o p r o d u c e hip
extension o n t h e opposite side. W i t h t h e
assistance of crutches, a reciprocal gait is
possible by activating one hip flexor at a time.
Swing-through gait is achieved by activating b o t h
hip flexors at the same time t o keep the legs
rigid. This orthosis is aligned so that it allows
crutchless standing. It is h o p e d that dynamic
stretching of the hip flexors will prevent p r o ­
gressive hip-flexion contractures. W e have
experienced gearbox maintenance p r o b l e m s
with this orthosis.
Children with a total paraplegia, i.e. thoracic
neurosegmental level, progress from the standing
brace t o a P a r a p o d i u m (Fig. 3), (Carroll, 1974).
Fig. 3. Parapodium.
This device supports the spine during b o t h
sitting a n d standing a n d is aligned so that the
child can stand without crutches. A swing-to or
swing-through gait can be achieved by the use
of crutches. T h e P a r a p o d i u m is constructed
from a prefabricated kit which has the following
design features: stability, low weight, adjust­
ability for growth, quickness of assembly, ease
of alignment, ease of maintenance. W i t h the
P a r a p o d i u m the shoe is " p a r t of t h e child," n o t
p a r t of the brace. Crutchless walking can be
facilitated by attaching a pivot-walker o r swivel-
walker platform t o t h e footplate. Special-
p u r p o s e attachments can be designed a n d
m o u n t e d easily. Crutchless standing m a k e s it
easier for the paraplegic child t o engage in
activities such as tossing a ball, dialing a tele­
p h o n e , reading from a b o o k in front of a class,
opening a bottle, or p o u n d i n g a nail at a work­
bench.
In t h e last couple of years we have been
making more and more use of polypropylene.
Practically all o u r children with instability of
the ankle-foot complex are fitted with a vacuum-
formed polypropylene insert (Carroll, 1974). If
knee stability is a p r o b l e m , a polypropylene
insert can be attached t o a polypropylene thigh
support by m e a n s of side hinges.
Orthoses in the research a n d development
stage at the O n t a r i o Centre for Crippled
Children are as follows:-
Plastazote shoes—to protect deformed in­
sensitive feet.
Trunk-suspension systems—to prevent scol­
iosis, pelvic obliquity, a n d ischial pressure
sores.
Curb-climbing wheelchairs—to b r o a d e n the
n o n a m b u l a t o r ' s environment.
Stand-up wheelchairs—to enable a n o n -
a m b u l a t o r t o assume a n d maintain a standing
position.
Early in this paper, goals were listed for
children with varying neurosegmental levels.
H o w often are these goals a t t a i n e d ? D e Souza
a n d Carroll (1974) found that in the second a n d
third decades, c o m m u n i t y a m b u l a t i o n was
achieved by 53 per cent of children with a sacral
neurosegmental level, 30 per cent of children
with a lower l u m b a r level, 10 per cent of children
with an upper l u m b a r level, a n d n o children
with a thoracic level. O u r great challenge for t h e
future is t o have these children continue t o
a m b u l a t e when adult, n o t just during the first
decade.
T h e third most i m p o r t a n t factor in deter­
mining a m b u l a t o r y status is the extent a n d
degree of the orthopaedic deformities (De Souza
a n d Carroll, 1974). It is incumbent o n the o r t h o ­
paedic surgeon, therefore, t o ensure t h a t t h e
spina bifida child under his care has the spine
balanced over t h e pelvis a n d hip, the h i p
balanced over the knee, a n d the knee balanced
over a plantigrade foot. O u r orthoses m u s t have
the following design characteristics: they m u s t
be effective, comfortable, lightweight, low in
cost, durable, cosmetically acceptable, easy to
manufacture, easy t o maintain a n d adjust for
growth, easy t o apply a n d remove, a n d they
m u s t u o t impede any of t h e activities of daily
living (Carroll, 1974).
T h r o u g h research we m u s t develop a m e a n s
of avoiding abduction, flexion a n d external
rotation contractures of the hip, while still
maintaining a position favouring h i p stability.
W e need better t r u n k supports. A s yet we d o n o t
have g o o d multiaxial h i p joints. W e must
develop a m e a n s of maintaining directional
stability for limbs t h a t a r e in below-knee braces.
T h e fourth m o s t i m p o r t a n t factor in deter­
mining a m b u l a t o r y status is the age a n d stature
of t h e patient. A s yet w e d o n o t have a satis­
factory m e a n s of getting a tall, heavy paraplegic
from a sitting t o a standing position. W e need
urinary-collecting devices for b o t h males a n d
females. W e m u s t assess t h e feasibility of
externally powered braces for a m b u l a t i o n . W e
need suitable stair-climbing aids. O u r architects
need t o b e educated s o t h a t environmental
barriers are removed from t h e community. W e
need total mobilisation of medical, paramedical,
engineering a n d c o m m u n i t y resources t o meet
these challenges.
REFERENCES
CARROLL, N . C . ( 1 9 7 4 ) . The orthotic management of
the spina bifida child. Clin. Orthop. 102, 108.
DE SOUZA, L . J . and CARROLL, N . C . ( 1 9 7 4 ) .
Functional ambulation in the braced spina bifida
child (submitted for publication).
HOFFER, M . M . , FEIWELL, E., PERRY, R., PERRY, J .
and BONNET, C . ( 1 9 7 3 ) . Functional ambulation in
patients with myelomeningocele. J. Bone and Joint
Surg., 5 5 A , 1 3 7 .
NATIONAL ACADEMY OF SCIENCES ( 1 9 7 3 ) . The child
with an orthopaedic disability—his orthotic needs
and how t o meet them. Report of meeting,
Annapolis, November 1 9 - 2 1 , 1 9 7 2 .