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There are many ways you can help children and their families get the care they need.
Boston Children's Hospital's Spinal Program provides comprehensive care—including evaluation, diagnosis, consultation, non-surgical therapies, surgery and follow-up care. How we treat your child's scoliosis will depend on several factors, including:
• the nature and severity of his curves
• his age at onset and his current age
• the rapidity of curve progression
• his underlying neuromuscular disease
• his general health including lung, heart and urologic function
• your family's wishes
Your child’s scoliosis team at Boston Children’s may include his doctor, an orthotist (a specialist who makes braces), a physical therapist and a nurse, who will guide you through the treatment process. Specialists, such as neurologists and physiatrists as well as social workers, speech/language specialists and others—will be part of the team as needed to address your child’s underlying neuromuscular condition.
As part of our family-centered approach, your child’s nurse will help with all your questions and appointments. The nurse can also:
• help you understand how best to care for your child, his brace, wheelchair, orthotics or other equipment
• design a schedule for you and him to follow
• help you meet others whose children have neuromuscular disease with scoliosis—in person and/or online
A young child with a severe early-onset curve can be treated with growth-friendly (growth preserving) surgical procedures such as growing rods and/or VEPTR. The metal rods inserted during 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.
Most neuromuscular conditions are diagnosed early in a child's life, and neuromuscular scoliosis may also present early. When scoliosis appears, your pre-adolescent child's team will use non-surgical treatments such as bracing, wheelchair modification, physical therapy and environmental adaptation to help your child adapt to his everyday environments, and to help improve his mobility:
• bracing: A brace supports your child's spine in a balanced position over the pelvis. A bracing program may help
with seating and function, and may delay surgery.
• physical therapy: Our physical therapy team's goal is to maximize your child's physical functioning. Our physical
therapists work closely with the Spinal Program to also provide exercise programs and additional therapies to
address pain and the muscular imbalance that can be associated with spinal abnormalities.
While most non-ambulatory pre-adolescent children are usually treated with bracing to control (not correct) spinal curves while they grow, stabilization by spinal fusion surgery is the most common treatment for neuromuscular scoliosis by the time a child reaches adolescence. But treatment will vary according to the type and severity of a child's neuromuscular condition.
The goals of a spinal fusion are to:
• 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
Spinal fusion for neuromuscular scoliosis usually has these characteristics:
• It's needed by the time a child reaches adolescence (usually sooner than with idiopathic scoliosis).
• The fused portion of the spine is longer than with idiopathic scoliosis.
• Surgeons use metal rods, hooks, screws and wires during surgery to correct the spinal curve and secure the
spine in position while the fusion heals and becomes solid.
• Combined anterior/posterior surgery is a common approach because:
- Some posterior elements may be missing from spine (as in spina bifida).
- This approach helps achieve a spine with pelvis in balance (usually in non-ambulatory patients).
MAGEC (MAGnetic Expansion Control) System: Boston Children’s spinal team is an early adopter of this adjustable growing rod system that uses magnetic technology and a remote control to non-invasively lengthen the device. When used in appropriate patients, the device offers the potential to reduce the number of surgical procedures children with idiopathic, neuromuscular or congenital spinal deformity must undergo when treated with growth-friendly surgical techniques. MAGEC replaces the periodic lengthening surgeries with a non-invasive alternative, reduces exposure to anesthesia and is expected to be more cost-effective than repetitive lengthening surgeries.
In preparation for your child's surgery, his Boston Children's surgical team will assess his:
• lung and heart function
• nutritional and protein status
• likelihood of post-operative feeding difficulties
• neurologic status and seizure medications
• urologic status
• bone health
• swallowing and regurgitation evaluation (for cerebral palsy patients)
• clotting and bleeding evaluation (for children subject to seizures, since some seizure medications can affect
Because neuromuscular scoliosis is associated with other underlying neuromuscular conditions, the complication rate after surgery is high. Complications are common, anticipated and treatable. They can include:
• respiratory problems: Post-operative pneumonia is a risk for a child with a poor cough reflex or some paralysis
of the chest (intercostal) muscles.
• wound problems: Skin breakdown and infection can occur.
• nutritional/feeding problems: A feeding tube may be necessary until the child can feed orally again.
• hip problems: Many children who have spinal fusion also have stiff or abnormal hips. Fusing the spine may make
existing hip contractures more troublesome.
• intestinal obstruction(ileus): This can result from intestinal sluggishness (hypomotility).
After surgery, most neuromuscular scoliosis patients go to the ICU (intensive care unit), where some may be put on a ventilator, and some may require a longer stay than others. Your child's hospital stay will probably be between five and 10 days.
During your child's hospital recuperation, his Children's caregivers will closely monitor his lungs, fluids and nutrition. They'll get him up and moving as soon as possible, and will extend his time upright a little more each day. His wheelchair will be modified for his improved sitting position.
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 minimized
His long-term outlook greatly depends on the extent and severity of—and the prognosis for—his underlying neuromuscular condition.
At Boston Children's, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit The Center for Families for all you need to know about:
• getting to Boston Children's
• navigating the hospital experience
• resources that are available for your family
In particular, we understand that you may have a lot of questions when your child is diagnosed with scoliosis as part of his neuromuscular disease. How will this affect my child long term? What do we do next? Children's can help you connect with extensive resources to help you and your family through this stressful time, including:
• patient education: From doctor's appointments to physical therapy and recovery, our nurses and physical
therapists will be on hand to walk you through your child's treatment and help answer any questions you may
have—Why will my child need surgery? How long will his recovery take? How should we manage home exercises
and therapy?-We'll help you coordinate and continue the care and support you received while at Boston Children's.
• parent-to-parent: Want to talk with someone whose child has been treated for neuromuscular scoliosis? We can
often put you in touch with other families who've been through the same process that you and your child are facing,
and who will share their experiences.
• faith-based support: If you are in need of spiritual support, we'll connect you with the Boston Children's
chaplaincy. Our program includes nearly a dozen clergy—representing Protestant, Jewish, Muslim, Catholic and
other faith traditions—who will listen to you, pray with you and help you observe your own faith practices during
your hospital experience.
• social work: Our social workers and mental health clinicians have helped many other families in your situation. We
can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping
with illness and dealing with financial issues.
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.”