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There are many ways you can help children and their families get the care they need.
At Boston Children’s Hospital, our Spinal Program team develops innovative treatments for scoliosis and other spine defects. We’re home to the world’s most extensive pediatric hospital research enterprise, and we partner with elite health care and biotech organizations around the globe. But as specialists in innovative, family-centered care, our physicians never forget that your child is precious, and not just a patient.
In dealing with your child’s neuromuscular scoliosis, you may want to know the basics about the spine and about the several forms of this spinal condition.
Scoliosis occurs, and is treated, as three main types:
The second-most common form of scoliosis, associated with disorders of the nerve or muscular systems like cerebral palsy, spina bifida, muscular dystrophy or spinal cord injury.
Congenital scoliosis results from a fetus’ abnormal spinal development in utero, such as a partial or missing formation or a lack of separation of the vertebrae.
The most common form of scoliosis, most commonly seen in adolescent and pre-adolescent girls. “Idiopathic” simply means that there is no definite cause. Most cases require no intervention.
There are many characteristics of neuromuscular scoliosis. Below are some characteristics to look out for:
• occurs in children with underlying neuromuscular disease
• usually a “C”-type curve
• onset much younger than many other forms of scoliosis
• more common and severe in non-ambulatory patients (those whose neuromuscular disease prevents them from
• curve virtually always progressive; progression can continue into adulthood
- stabilize the curve and stop its progression
- balance the spine and pelvis (usually in non-ambulatory patients)
- regain the ability to sit upright (in children who have lost this ability)
- improve/preserve lung function
You, your child’s doctor or his caregiver will most likely notice his spinal curve because of a deteriorating ability to sit or a change in his body’s overall position:
• he may begin leaning toward one side of his seat in an uneven seating posture
• he may increasingly need to use his arms for seating support
You may notice that his:
• shoulders are of uneven heights
• head isn’t centered with the rest of his body
• hips are of uneven heights or positions, or uneven buttocks
• shoulder blades are of uneven heights or positions
• arms hang beside his body unevenly
• left and right sides of his back appear different in height when he bends forward
A young child with a severe early-onset curve can be treated with growth-friendly (growth preserving) procedures such as growing rods and/or VEPTR. The metal rods inserted in these procedures can help control the curve until he’s ready for spinal fusion. The rods are made longer as the child’s spine grows.
The outlook for your child mostly depends on the nature, severity and effects of his neuromuscular disease, and less on his scoliosis.
With successful surgery and attentive post-operative care, your child can:
• return to the functional level he had attained before surgery
• have his spine solidly fused and in balance, reducing the deformity
• have the potential for improved lung function and decreased susceptibility to pneumonia
• find it easier to sit up; requirements for seating adaptation will usually be improved
Boston Children’s Hospital’s research into spinal problems—including neuromuscular scoliosis—means that we will provide your child with the most innovative care available.
If your child is diagnosed with neuromuscular scoliosis, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you. Lots of parents find it helpful to jot down questions as they arise—that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
Some of the questions you may want to ask include:
• What is happening to my child, and why?
• Are other tests needed to diagnose my child?
• What actions might you take after you reach a diagnosis?
• What will happen with growth over time?
• Will there be restrictions on my child’s activities?
• Will there be long-term effects?
• What can we do at home?
Children most at risk for developing neuromuscular scoliosis include:
• non-ambulatory children with quadriplegic cerebral palsy
• children who have spina bifida with a high level of paralysis
• children with spinal cord paralysis before age 10 years
Besides the typical issues any teenager faces—from social acceptance to body changes and more—if you have a neuromuscular disease that includes scoliosis, it’s true that you’ll also have to deal with medical appointments, feeling different and assuming a big personal responsibility for maintaining your health. You may also wonder why you need surgery.
It’s important for you to know that surgery for your scoliosis will fuse your spine to correct the curve and prevent further curvatures. You’ll be able to sit more upright in your wheelchair. You’ll also probably breathe better and be less susceptible to respiratory problems.
Even knowing the benefits of surgery and treatments, this can be a tough time for you. If you feel overwhelmed, depressed or anxious during this important time in your transition to adulthood, speak to your doctor or counselor to get help.
Neuromuscular scoliosis is associated with your child’s underlying neuromuscular disease. Nothing you or your child did caused it, and there’s nothing you could have done to prevent it.
• Adams forward bending test: a screening measure for assessing scoliosis
• ambulatory: pertaining to walking, able to walk
• anterior fusion: spinal fusion surgery on the front of the spine approached from the side of the body;
sometimes combined with posterior fusion, usually performed on the same day or in stages
• brace, bracing (spinal orthosis): A brace supports your child’s spine in a balanced position over the pelvis.
A bracing program may help delay surgery.
• The Center for Families at Boston Children’s: dedicated to helping families find the information, services and
resources they need to understand their child’s medical condition and take part in their care
• Cobb angle: an angular measurement on x-ray to evaluate the severity and degree of scoliosis curves
• congenital scoliosis: a form of scoliosis resulting from abnormal in utero spinal development, such as a partial or
missing formation or a lack of separation of the vertebrae
• contractures, joint contractures: joints with limited range of motion and that cannot be fully straightened or
bent; frequent among patients who don’t walk; can be a complication in hips after surgery
• diagnosis: identifying disease or injury through examination, testing and observation
• ICU: intensive care unit
• idiopathic scoliosis: the most common form of scoliosis, mainly affecting adolescent girls. “Idiopathic” simply
means that there is no definite cause. Nothing you or your child did caused the defect, and there’s nothing you
could have done to prevent it.
• instrumentation: the metal rods, hooks, screws and wires implanted during spinal fusion surgery to correct
the spinal curve and secure the spine in position while the fusion heals and becomes solid
• neuromuscular: affecting, or characteristic of, both neural (nerve) and muscular tissue
• neuromuscular scoliosis: scoliosis that is associated with disorders of the nerve or muscular systems like
cerebral palsy, spina bifida, muscular dystrophy or spinal cord injury
• orthopedics: the medical specialty concerned with diagnosing, treating, rehabilitating and preventing disorders
and injuries to the spine, skeletal system and associated muscles, joints and ligaments
• orthopedist, orthopedic surgeon: a physician specializing in surgical and non-surgical treatment of the spine,
skeletal system and associated muscles, joins and ligaments
• orthotics: the science of designing and fitting of devices such as braces to treat orthopedic conditions
• physical therapy:a rehabilitative health specialty that uses therapeutic exercises and equipment to help patients
improve or regain muscle strength, mobility and other physical capabilities
• posterior fusion: spinal fusion surgery approached from the back of the body; sometimes combined with anterior
fusion, performed either simultaneously or in two stages
• progression, curve progression: worsening of a scoliosis curve
• scoliometer: a surface measurement device for evaluating the angle of torso rotation (ATR or scoliometer angle,
which is not the ‘Cobb’ angle measured on x-ray)
• scoliosis: a spinal condition in which the spine, in addition to the normal front to back curvature, has an abnormal
side-to-side “S-” or “C”-shaped curvature. The spine is also rotated or twisted, pulling the ribs along with it. Scoliosis
occurs in three main types: neuromuscular (associated with neuromuscular diseases); congenital (present at birth);
and idiopathic (no definite cause).
• seat supports, seating supports: supports for helping to sit upright (usually in a wheelchair) for children with
insufficient balance for self-support. Seating supports help children sit upright, but they don’t correct curves.
• spinal cord: a nerve bundle within the vertebral column that extends down from the brain stem; it conducts signals
in both directions between the brain and extremities, and allows for bodily motion and sensation
• spinal fusion: usually a solid fusion (solidification) of the curved part of the spine, achieved by operating on the spine,
adding bone chips and allowing the vertebral bones and bone chips to slowly heal together to form a solid mass of
bone called a fusion. A fusion partially corrects a scoliosis curve, stabilizes the curve and stops its progression, as well
as balancing the spine and pelvis (usually in non-ambulatory patients).
• spine (spinal column, vertebral column): the series of moving vertebrae forming the axis of the skeleton and
protecting the spinal cord
• VEPTR™ (titanium rib) procedure: an operation that expands the chest and allows continued growth of the chest
and spine. A curved metal rod fits the back of the chest and spine, helping the spine to become straighter and allowing
the lungs to grow and fill with enough air to breathe. The device can be made longer as your child grows.
• vertebra, vertebrae: the individual spine bones that form the spinal column
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”