KidsMD Health Topics

Congenital Scoliosis

  • Patients come here from around the world for their scoliosis treatment. We're happy to be able to provide world-class care for them and for our local patients.

    –Spinal Program Team, Orthopedic Center

    If your child has been diagnosed with congenital scoliosis, we know that you and your family are under stress and may be dealing with other conditions associated with your child’s scoliosis. So, at Children’s Hospital Boston, we’ll approach your child’s treatment with sensitivity and support—for your child and your whole family. And it will be our constant goal to maximize your child’s quality of life.

    You can have peace of mind knowing that our team in the Boston Children’s Spinal Program has treated many children with spinal problems—some of which are so rare that few pediatric doctors have ever come across them—so we can provide your child with expert diagnosis, treatment and care, regardless of how complex his condition may be.

    About scoliosis

    Scoliosis is a 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 to form a multidimensional curve.

    Scoliosis occurs, and is treated, as three main types:

    About congenital scoliosis

    Congenital scoliosis is the type that developed because your child’s spine didn’t form correctly in utero. Some of the vertebrae (vertebral segments) in his spine formed abnormally (failure of formation), didn’t separate correctly (failure of segmentation) or there was some combination of both. As a result, his spine has a side-to-side curvature that has a 75 percent chance of progressing (worsening) if not treated surgically.

    Because the spine forms at the same time as certain other organ systems in the first six weeks of pregnancy, more than half of affected children have one or more other improperly formed systems. This means that your child’s genitourinary, cardiac, auditory, nervous (neurological, neural) or renal system(s) may also have formed incorrectly or incompletely. Additional problems of the spine or spinal cord can also be associated with congenital scoliosis.

    The Boston Children's Hospital approach

    Boston Children’s Spinal Program is known for clinical innovation, research and leadership. We’ll provide your child with the most advanced diagnostics and treatments—several of which were developed by our own researchers and clinicians.

    As one of the first comprehensive programs, Boston Children’s Orthopedic Center is the largest and most experienced pediatric orthopedic surgery center in the United States, performing more than 6,000 surgical procedures each year. Our program—ranked among the top programs by U.S.News & World Report—is the nation’s preeminent care center for children and young adults with congenital, neuromuscular, developmental and post-traumatic problems of the musculoskeletal system.

    Some of our team’s unique accomplishments include our:

    • development of the Boston Brace, a custom bracing system widely used throughout the United States and Europe
    • unique experience in the treatment of adolescent hip conditions
    • success with the VEPTR(vertical expandable prosthetic titanium rib) procedure: In 1998, Children’s was selected as a site for the first extensive VEPTR use outside San Antonio, where it was developed. Boston Children’s has the second most extensive VEPTR experience in the nation.
    • experience with, and emphasis on, treating infantile (early-onset) scoliosis
    • experience with, and research in, brachial plexus birth palsy, including our international, multi-center study of this complex condition
    • Sports Medicine Program, including its pioneering research into the regeneration of ACL tissue and growth plate-sparing surgeries for ACL repair in pre-adolescents
    • extensive orthopedic research laboratories
    • Orthopedic Clinical Effectiveness Research Center for the study of children’s musculoskeletal disorders

    Each year, our Spinal Program caregivers provide comprehensive evaluation, diagnosis, consultation, treatment and follow-up care for children during more than 6,000 outpatient visits. And every year, our orthopedic surgeons perform more than 300 spine procedures.

    Contact Us

    Orthopedic Center
    Boston Children's Hospital

    300 Longwood Avenue
    Fegan 2
    Boston MA 02115
    617-355-6021

  • At Boston Children's Hospital, our Spinal Program team develops innovative treatments for scoliosis and other spine problems. And because our research informs our treatment, we’re known for our science-driven, experience-based approach.

    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 scoliosis, you may want to know the basics about the spine and about the several forms of this spinal problem.

    What is the spine?

    Made up of many individual bones called vertebrae, the spine is joined together by muscles and ligaments. Flat, soft discs separate and cushion each vertebra from the next. Because the vertebrae are separate, the spine is flexible and can bend. Together the vertebrae, discs, muscles and ligaments make up the spine or vertebral column.

    Different regions of the spine are named differently. The cervical spine refers to the neck, the thoracic spine to the chest, and the lumbar and sacral spines to the lower back.

    What is scoliosis?

    Although the spine has natural curves from front to back, it shouldn’t curve sideways very much. A side-to-side curve measuring 10 degrees or greater is called scoliosis, and may take the shape of an abnormal “S” (double curve) or a long “C” (single curve). The scoliotic spine is also rotated or twisted, pulling the ribs along with it to form a multi-dimensional curve. In serious cases, lung function can be affected.

    What are the three main types of scoliosis?

    Scoliosis occurs—and is treated—as three main types:

    • congenital scoliosis: Congenital scoliosis is a rare form of scoliosis, affecting just one out of 10,000 persons. The condition developed because your child’s spine didn’t form correctly in utero. Some vertebrae (vertebral segments) of the spine formed abnormally (failure of formation), didn’t separate correctly (failure of segmentation) or there was some combination of both.

      Because the spine forms at the same time as certain other organ systems in the first six weeks of pregnancy, more than half of congenital scoliosis-affected children have one or more other improperly formed systems.

      This means that your child’s genitourinary, cardiac, auditory, nervous (neurological, neural) or renal system(s) may also have formed incorrectly or incompletely. Additional problems of the spine or spinal cord can also be associated with congenital scoliosis.
    • neuromuscular scoliosis: the second-most common form of scoliosis, associated with disorders of the nerve or muscular systems like cerebral palsy, spina bifida, myopathy, muscular dystrophy or spinal cord injury.
    • idiopathic scoliosis: the most common form of scoliosis, most often seen in adolescent and pre-adolescent girls. “Idiopathic” simply means that there is no definite cause. Most cases don’t need intervention.

    What characterizes congenital scoliosis?

    Some characteristics of congenital scoliosis include:

    • occurs in children whose spinal vertebrae in utero formed abnormally (failure of formation), did not separate correctly (failure of segmentation), or there was a combination of both
    • condition is present at birth (congenital)
    • the least common form of scoliosis—affecting just one in 10,000 people
    • greatly variable in severity—from mild to life-threatening
    • sometimes detected in infants and toddlers, sometimes not until adolescent growth spurt—and frequently never noted or noted incidentally
    • in general, but not always, the younger the child is when the curve appears, the more severe the curve tends to be—and the more aggressive its progression (worsening) tends to be
    • not usually painful in children
    • other organ system abnormalities associated with congenital scoliosis in half of patients
      • genitourinary and renal
      • congenital heart defects
      • spinal cord abnormalities
      • auditory
      • rib abnormalities (can limit chest cavity and lung growth)
      • limb abnormalities (such as radial aplasia, Sprengel’s deformity)
      • nervous system (neurological, neural)
         
    • curves can progress most aggressively (fast) during a child’s two main growth spurts
      • at one to three years
      • pre-adolescent
         
    • many congenital curves progress (worsen)
      • the type and severity of the curve help predict the risk of the curve progressing as a child grows
         
    • some curve patterns progress slowly, some very aggressively (especially in younger children)
    • bracing doesn’t usually correct or arrest congenital curves
      • bracing can help correct compensatory curves that develop to offset congenital curves
         
    • physical therapy and exercises usually not effective alone
    • surgery usually required for progressive curves
      • many surgical approaches—surgeons customize for each child’s unique case
         
    • surgical goals are to:
      • reach the end of the child’s growth with a reasonably straight, balanced spine and balanced torso
      • allow the spine to grow normally as much possible (greater torso length than if he hadn’t been treated)
      • prevent compromise of lung function by creating room for chest cavity and lungs to grow (in young children)
      • prevent future back pain
      • prevent damage to nervous system
         
    • children treated for congenital scoliosis must be followed until fully grown

    What are the signs and symptoms of congenital scoliosis?

    Congenital scoliosis curves can sometimes be visible in infants and toddlers. But often, they’re detected in small children only if there’s been another reason to x-ray the child’s chest or back. Another possible clue to congenital scoliosis can be a urinary, renal, auditory or neural (nervous system) condition, since these can be associated with congenital scoliosis.

    Signs of associated conditions that might indicate congenital scoliosis can include:

    • hairy patch or dimples on back
    • rib hump or small bump on back
    • pain or spasticity in lower extremities
    • stiff or short neck or spine
    • abnormally formed hand, arm or foot
    • difficulty hearing
    • genitourinary or renal anomalies or defects
    • other musculoskeletal anomalies
    • chromosomal abnormalities

    Often, congenital scoliosis may become apparent during or just before the adolescent growth spurt. Common signs and symptoms may include:

    • head not centered with the rest of the body
    • uneven hip heights or positions
    • uneven shoulder blade heights or positions
    • uneven arm lengths
    • when bending forward, the left and right sides of the back are asymmetrical

    How do you diagnose congenital scoliosis?

    Doctors will use medical and family histories, physical exams and diagnostic tests to determine the nature, extent and effects of your child’s scoliosis and any accompanying conditions. Your Children’s multi-disciplinary care team will evaluate the structure and function of his lungs, chest, kidneys, bladder, feet and hands, hearing and neurologic function.

    Diagnostic testing can include:

    • x-ray
    • magnetic resonance imaging (MRI) (especially of the spinal cord)
    • computerized tomography scan (CT or CAT scan)
    • ultrasound (including spinal and renal ultrasound)
    • pulmonary function tests
    • chromosomal analysis

    How do you treat congenital scoliosis?

    Because congenital scoliosis may progress (worsen) with growth, your child must be followed until the end of his growth, with closest observation during periods of rapid growth. If his curve doesn’t progress, observation without treatment may be all that’s needed.

    If your child’s curve is progressing, treatment will usually include one of several approaches to spinal fusion or other surgery by the time he reaches adolescence (earlier if a severe curve presents in a very young child).

    If your child is developing a severe curve while very young, he can be treated with growth-friendly (growth preserving) surgical procedures such as growing rods and/or VEPTR. 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.

    For some localized curves, osteotomies (controlled cutting procedures) such as a hemi-vertebra wedge resection or a vertebral column resection may be appropriate. For older children with a curve involving a long section of spine, spinal fusion may be appropriate.

    Will there be complications after the surgery?

    Complications are uncommon after spinal surgery for congenital scoliosis. There’s a small chance of infection or failure to heal, as well as a small chance of developing a new curvature above or below the fusion. And there is a risk of serious neurological injury (paralysis) that’s higher than with most other forms of scoliosis.

    Who will be on my child’s scoliosis treatment team at Boston Children’s?

    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. Neurologists (nervous system) cardiologists (heart), social workers and others can join the team as needed in addressing your child’s needs.

    What will happen after surgery?

    After surgery:

    • If your child requires bracing or casting for support while his spine heals, the team will help him adjust to wearing his brace.
       
    • 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 and his brace or other equipment
      • design a schedule for him to follow
      • help him plan his day-to-day activities
      • help you meet other parents of children with congenital scoliosis—in person and/or online
         
    • Your child’s physical therapist will evaluate his posture, muscle strength and flexibility, and will design a home exercise program just for him.

    Will my child be OK?

    The outlook for your child greatly depends on the nature and severity of his congenital scoliosis, as well as any other accompanying conditions:

    • Many children function perfectly normally.
       
    • Commonly, the spine is shorter than normal, even if treatment isn’t needed.
       
    • The spine is stiffer than normal.
      • The degree of stiffness is relative to how much of the spine is involved.
      • Fusion makes the spine stiffer.
      • For some children, this is visible and dictates restricted activities.
         
    • For some children with early, severe curves, breathing may be affected.

    With successful spine surgery and attentive post-operative care, he can have a spine that grows as normally as possible, with greater torso length than if he hadn’t been untreated.

    FAQ

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    Q: What is scoliosis?

    A:
    Scoliosis is a condition in which the spine, in addition to the normal front to back curvatures, has an abnormal side-to-side “S-” or “C”-shaped curvature. The spine is also rotated or twisted, pulling the ribs along with it. Sometimes, a child’s lung function can be compromised when the curvature is severe or starts very early in life.

    Q: What is congenital scoliosis?

    A:
    Congenital scoliosis is a rare form of scoliosis, affecting just one out of 10,000 people. The condition developed because your child’s spine didn’t form correctly in utero. Some vertebrae of his spine formed abnormally (failure of formation), didn’t separate correctly (failure of segmentation), or there was some combination of both.

    Q: If my child has congenital scoliosis, will he be OK?

    A:
    The outlook for your child depends on the nature and severity of his scoliosis and any associated conditions. Some children function perfectly normally. Commonly, the spine is shorter than normal, even if treatment isn’t needed. The spine is stiffer than normal. For some children with early, severe curves, breathing may be affected.

    Q: How does Boston Children’s treat congenital scoliosis?

    A:
    If mild and non-progressing, your child’s congenital scoliosis can be treated through simple observation and monitoring. If his curve progresses, treatment will usually include one of several approaches to spinal fusion or other surgery by the time he reaches adolescence (can be earlier if the curve is early and severe).

    Q: What are the signs and symptoms of congenital scoliosis?

    A:
    Congenital scoliosis curves can sometimes be visible in infants and toddlers. But often, they’re detected in small children only if there’s been another reason to x-ray the child’s chest or back. Another possible clue to congenital scoliosis can be a genitourinary, renal, auditory or neural (nervous system) condition, since these can be associated with congenital scoliosis.

    Signs of associated conditions that might indicate congenital scoliosis can include:

    • hairy patch or dimples on back
    • rib hump or small bump on back
    • pain or spasticity in lower extremities
    • stiff or short neck or spine
    • abnormally formed hand, arm or foot
    • difficulty hearing
    • genitourinary or renal anomalies or defects
    • other musculoskeletal anomalies
    • chromosomal abnormalities

    Often, congenital scoliosis may become apparent during or just before the adolescent growth spurt. Common signs and symptoms may include:

    • head not centered with the rest of the body
    • uneven hip heights or positions
    • uneven shoulder blade heights or positions
    • uneven arm lengths
    • when bending forward, the left and right sides of the back are asymmetrical

    Q: How is scoliosis usually diagnosed?

    A:
    Doctors will use medical and family histories, physical exams and diagnostic tests to determine the nature, extent and effects of your child’s scoliosis and any accompanying conditions. Your Boston Children’s multi-disciplinary care team will evaluate the structure and function of his lungs, chest, kidneys, bladder, feet and hands, hearing and neurologic function.

    Diagnostic testing can include:

    • x-ray
    • magnetic resonance imaging (MRI) (especially of the spinal cord)
    • computerized tomography scan (CT or CAT scan)
    • ultrasound (including spinal and renal ultrasound)
    • pulmonary function tests
    • chromosomal analysis

    Q: What should I expect after my child has spine surgery for scoliosis?

    A:
    After your child’s spine surgery, his Boston Children’s pediatric orthopedist and physical therapist can advise you on at-home therapies for him, as well as any home therapy equipment you might need.

    Q: What are the post-surgery and longer-term outlooks for a child with congenital scoliosis?

    A:
    The outlook for your child greatly depends on the nature and severity of his congenital scoliosis, as well as any other accompanying conditions:

    • Many children function perfectly normally.
    • Commonly, the spine is shorter than normal, even if treatment isn’t needed.
    • The spine is stiffer than normal.
      • The degree of stiffness is relative to how much of the spine is involved.
      • Fusion makes the spine stiffer.
      • For some children, this is visible and dictates restricted activities.
         
    • For some children with early, severe curves, breathing may be affected.

    With successful spine surgery and attentive post-operative care, he can have a spine that grows as normally as possible, with greater torso length than if he hadn’t been untreated.

    Q: What is Boston Children’s experience treating congenital scoliosis?

    A:
    At Boston Children’s Spinal Program, we’re known for our clinical innovations, research and leadership. We provide the most advanced diagnostics and treatments—several of which were pioneered and developed by Boston Children’s researchers and clinicians.

    Q: What are Boston Children’s spine research and innovations?

    A:
    Our Clinical Effectiveness Research Center (CERC) helps coordinate research and clinical trials to improve the quality of life for children with musculoskeletal disorders, such as scoliosis. CERC physicians are pursuing several areas of basic and clinical research based at Children’s and the Harvard Orthopaedics Biomechanics Laboratory.

    show_more_end

    Causes

    Congenital scoliosis developed because your child’s spine didn’t form correctly in utero. Some of the vertebrae (vertebral segments) in his spine formed abnormally (failure of formation), didn’t separate correctly (failure of segmentation) or there was some combination of both.

    Signs and symptoms

    The curve may be apparent in infants or toddlers, but may first become apparent in adolescence. In young children, the curve is sometimes detected incidentally by chest or back x-ray for other reasons.

    Signs of associated conditions that might indicate congenital scoliosis can include:

    • hairy patch or dimples on back
    • rib hump or small bump on back
    • pain or spasticity in lower extremities
    • stiff or short neck or spine
    • abnormally formed hand, arm or foot
    • difficulty hearing
    • genitourinary or renal anomalies or defects
    • other musculoskeletal anomalies
    • chromosomal abnormalities

    Often, congenital scoliosis may become apparent during or just before the adolescent growth spurt. Common signs and symptoms may include:

    • head not centered with the rest of the body
    • uneven hip heights or positions
    • uneven shoulder blade heights or positions
    • uneven arm lengths
    • when bending forward, the left and right sides of the back are asymmetrical

    When to seek medical advice

    Consult your doctor if you notice that your child’s:

    • shoulders are of uneven heights
    • head isn’t centered with the rest of his body
    • hips are of uneven heights or positions
    • 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

    Also, consult your doctor is your child:

    • has problems with his genitourinary tract
    • has breathing difficulty
    • has rapid or irregular heartbeat
    • has an irregularly shaped hand, arm or foot

    Questions to ask your doctor

    If your child is diagnosed with congenital 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?

    Who’s at risk

    Congenital scoliosis is not thought to be an inherited disease and doesn't tend to run in families. Research studies continue, but there’s currently no reliable way to predict who will develop the condition.

    Complications

    Complications are uncommon after spinal surgery for congenital scoliosis. There’s a small chance of infection or failure to heal, as well as a small chance of developing a new curvature above or below the fusion. And there is a risk of serious neurological injury (paralysis) that’s higher than with most other forms of scoliosis.

    Long-term outlook

    The outlook for your child greatly depends on the nature and severity of his congenital scoliosis, as well as any other accompanying conditions:

    • Many children function perfectly normally.
    • Commonly, the spine is shorter than normal, even if treatment isn’t needed.
    • The spine is stiffer than normal.
      • The degree of stiffness is relative to how much of the spine is involved.
      • Fusion makes the spine stiffer.
      • For some children, this is visible and dictates restricted activities.
         
    • For some children with early, severe curves, breathing may be affected.

    With successful spine surgery and attentive post-operative care, he can have a spine that grows as normally as possible, with greater torso length than if he hadn’t been untreated.

    For teens

    Besides the typical issues all teenagers face—from social acceptance to body changes and more—if you have scoliosis and possibly another associated health problem, 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 help correct the curve and prevent further curvature. You’ll also probably grow somewhat taller than if you hadn’t been treated.

    Even knowing the benefits of surgery and treatments, you might find this to be a tough time. 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.

    What to expect after your child’s surgery

    After your child’s spinal surgery, his Children’s pediatric orthopedist and physical therapist can advise you on at-home therapies for him, as well as any home therapy equipment you might need.

    Prevention

    Your child’s congenital scoliosis developed because his spine didn’t form correctly in utero. Some vertebrae (vertebral segments) of the spine formed abnormally (failure of formation), didn’t separate correctly (failure of segmentation), or there was some combination of both. The condition isn’t hereditary, and there’s nothing you could have done to prevent it.

    Congenital scoliosis glossary

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    • Adams forward bending test: a screening measure for assessing scoliosis
    • 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 custom-made brace worn after spinal fusion surgery can protect your child’s spine while the fusion heals and becomes fully solid. Bracing is not an effective therapy for treating congenital scoliosis, but can be effective for controlling secondary (compensatory) curves that result from (compensate for) the congenital curve.
    • 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
    • compensatory: offsetting, counterbalancing
    • 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
    • convex hemi-epiphysiodesis: a procedure performed to stop abnormal growth on the convex side of the spine so that continued growth on the concave side can have a chance to correct the curve
    • diagnosis, diagnostics: identifying disease or injury through examination, testing and observation
    • excision: See resection
    • expansion thoracostomy (thoracotomy): a surgical procedure in which one or more separations are made between the ribs and the ribs are parted to make the chest larger. Sometimes, congenitally abnormal (fused) ribs are separated; other times, multiple cuts are made in the ribs, or the naturally occurring space between ribs is enlarged.
    • genitourinary tract: the organ system of the reproductive organs and the urinary system, grouped together because of their proximity and common pathways
    • hemivertebra, hemivertebrae: abnormal triangular- or trapezoidal-shaped vertebra(e), rather than rectangular-shaped as in normal vertebra(e) (See vertebra.)
    • hemivertebra resection: a procedure in which the abnormally-shaped vertebrae are removed, and the vertebrae above and below the hemivertebrae are fused together. Instrumentation is often inserted to support the fusion, and the child will wear a cast while the spine heals. This procedure involves some risk to the nervous system.
    • idiopathic scoliosis: the most common form of scoliosis, mainly affecting adolescent girls. “Idiopathic” simply means that there is no definite cause.
    • instrumentation: metal rods, hooks, screws and wires implanted during spinal fusion surgery (and some non-fusion procedures) to correct the spinal curve and secure the spine in position while the fusion heals and becomes solid
    • in situ: in place, at the (original) site
    • in utero: in the womb
    • musculoskeletal: relating to the muscles and skeleton
    • neural (neurological): of, or relating to, the nervous system
    • neuromuscular: affecting, or characteristic of, both neural (nerve) and muscular tissue
    • neuromuscular scoliosis: the form of scoliosis that's 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 treatments 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
    • osteotomy: controlled breaking or cutting and realigning of bone into correct position. A spinal osteotomy may be performed when there is significant rigid deformity of the spine.
    • 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 and performed either simultaneously or in two stages
    • progression, curve progression: worsening of a scoliosis curve
    • radiograph, radiogram: x-ray
    • resection (or excision): surgical removal of all or part of an organ, tissue or structure
    • 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 defect 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: congenital (present at birth); neuromuscular (associated with neuromuscular diseases); and idiopathic (no definite cause).
    • 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 (fusion). A fusion partially corrects a scoliosis curve, stabilizes the curve and stops its progression, as well as balancing the spine and pelvis.
    • spine (spinal column, vertebral column): the series of moving vertebrae forming the axis of the skeleton and protecting the spinal cord
    • thoracic insufficiency syndrome: the inability of the chest (thorax) to support normal breathing or lung growth. VEPTR surgery addresses this syndrome in children with congenital scoliosis and other spine and rib problems.
    • torso: the body, excluding the head, neck and limbs; the trunk of the body
    • 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 are the building blocks of the spinal column
    • vertebral column resection: an osteotomy procedure that uses instrumentation to help restore spinal balance in children whose spinal deformity is particularly severe and rigid.

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  • At Boston Children's Hospital, we know that the first step in treating your child is forming an accurate and complete diagnosis.

    We'll use medical and family histories, physical exams and diagnostic tests to determine the nature, extent and effects of your child’s scoliosis and any associated conditions. Your Boston Children’s multi-disciplinary care team will evaluate the structure and function of his lungs, chest, kidneys, bladder, feet and hands, hearing and neurologic function.

    Diagnostic testing can include:

    • x-ray: produces images of bones, internal tissues and organs onto film
    • MRI (magnetic resonance imaging): produces details images of organs and structures within the body; especially useful for assessing the spinal cord
    • CAT scan (CT scan, computerized tomography scan): produces detailed images of any part of the body, including the bones, muscles, fat and organs. Images are more detailed than those of x-rays.
    • ultrasound: produces images of blood vessels, tissues and organs. Doctors can view internal organs as they function, and assess blood flow through vessels.
    • pulmonary function tests: measures how well the lungs take in and release air, as well as how well they circulate oxygen into the body
    • chromosomal analysis
  • Boston Children's Hospital's Spinal Program provides comprehensive care—including evaluation, diagnosis, consultation, surgery, non-surgical therapies and follow-up care.

    Because congenital scoliosis may progress (worsen) with growth, your child must be followed until the end of his growth, with closest observation during his periods of rapid growth. How we treat your child's congenital scoliosis will depend on several factors, including:

    • the nature and severity of his curves
    • his age upon presentation and his current age
    • the rapidity of his curve's progression
    • any associated conditions
    • his general health, including lungs, chest, urologic and other systems

    Treatment options include:

    • observation and measurement:
      • If your child has smaller curves and curves that form balanced patterns, they can be minor enough to be followed and measured without treatment.
      • Your child's doctor will closely observe the curve with sequential x-ray documentation, most frequently during his periods of rapid growth.
      • Observation of certain curve types can predict his curve's likely progression, as well its likely speed of progression.
         
    • bracing:
      • Bracing is not an effective therapy for treating congenital scoliosis curves, which are usually rigid and inflexible.
      • Bracing can be effective for controlling the secondary (compensatory) curves that can develop above or below the congenital curve.
      • A brace worn after spinal fusion surgery can protect your child's spine while his fusion heals and becomes fully solid.
         
    • surgery:
      • Some children with congenital scoliosis are treated by spinal fusion or other surgery to prevent further—or anticipated—progression of a child's curve, usually by the time he reaches adolescence (earlier if a severe curve presents in a very young child).
      • The decision for surgery is made by assessing many factors—including your child's age, the progression of his curve, and the amount, type and location of the deformity.

    Surgical goals

    The goals of spinal surgery for congenital scoliosis are to:

    • reach the end of the child's growth with a reasonably straight, balanced spine and a balanced torso
    • allow the spine to grow normally as much possible (greater torso length than if he hadn't been treated)
    • prevent compromise of lung function by creating room for chest cavity and lungs to grow (especially in young children)
    • prevent future back pain
    • prevent damage to nervous system

    Surgical options for spinal fusion

    Your child's surgeon has several surgical options for spinal fusion, depending on the specific features of your child's congenital scoliosis—including, but not limited to his age, the progression of his curve, and the amount, type and location of the deformity.

    Surgical approaches include:

    • in situ spinal fusion: This surgery is performed “in place” to stop the abnormal growth of the spine before it becomes seriously deformed.

      Disc material in front, or cartilage in back, is removed and replaced with bone graft. The graft of healthy bone will eventually fuse with the abnormal vertebrae into a solid bone mass as it heals. Instrumentation (metal rods, wires, hooks and screws) can be used to help stabilize the fusion and partially straighten the spine. Casting or bracing for four to six months may be needed until the fusion occurs.
    • hemivertebra resection (excision): Hemivertebrae are triangular- or trapezoidally-shaped vertebrae (instead of the normal rectangular shape). If located at the lower part of the spine, a hemivertebra can cause the base of the spine to tilt and the child to lean to one side.

      In this procedure, the abnormally-shaped vertebrae are removed, and the next vertebra above and below the hemivertebrae are fused together. Instrumentation is often inserted to support the fusion, and the child will wear a cast while the spine heals.
    • reconstructive osteotomies and instrumentation: If your child's spinal deformity is particularly severe and rigid, it may cause tilting of his spine, deterioration of his torso shape, breathing problems, pain and risk to the spinal cord.

      This severity of deformity may not be manageable with the treatments described above. Your child's fixed, severe deformity may need resection of part of his vertebral column (vertebral column resection), followed by instrumentation to restore spinal balance.

    Surgical alternatives to spinal fusion in the very young

    If your child is developing a severe curve while very young, he can be treated with growth-friendly (growth preserving) surgical procedures such as growing rods and/or VEPTR. 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:

    • growing rods: Spinal fusion performed on a growing child can lead to some stunting of his torso height, and possible impairment of his chest and lung growth. Inserting growing rods (instrumentation without fusion) allows for continued growth of the spine while controlling the curve progression.

      The rods are attached to the spine above and below the curve. They help correct the curve, and are expandable through day surgery every four to six months as the child grows, until he's ready for spinal fusion surgery.
    • VEPTR (vertical expandable titanium rib): VEPTR surgery can treat a child with combined chest and spine deformity, particularly if the chest deformity is the more severe.

      The goal is to make one or both sides of the chest larger, longer or more normal in shape, to allow the child's lungs to expand or grow. A larger, longer or straighter chest can also help his abnormal spine stay as straight as possible without spinal fusion, while still allowing for spine growth.

      One or more ribs are spread apart to make the chest larger (expansion thoracostomy). Sometimes, congenitally abnormal (fused) ribs are separated. The VEPTR expandable rod is then attached to healthy ribs above and below, or to ribs above and spine or pelvis below. For children with congenitally small chests on both the right and left, operations can be done on both sides.
    • 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.

    Complications after surgery

    Complications are uncommon after spinal surgery for congenital scoliosis. There's a slight chance of infection or failure to heal, as well as a slight chance of developing a new curvature above or below the fusion. And there is a risk of serious neurological injury (paralysis) that's higher than with most other forms of scoliosis.

    Caring for your child after surgery

    After your child's spinal surgery, his Boston Children's pediatric orthopedist and physical therapist can advise you on at-home therapies, as well as any home therapy equipment you might need.

    Longer-term outlook

    The outlook for your child greatly depends on the nature and severity of his congenital scoliosis, as well as any other accompanying conditions:

    • Many children function perfectly normally.
    • Commonly, the spine is shorter than normal, even if treatment isn't needed.
    • The spine is stiffer than normal.
      • The degree of stiffness is relative to how much of the spine is involved.
      • Fusion makes the spine stiffer.
      • For some children, this is visible and dictates restricted activities.
         
    • For some children with early, severe curves, breathing may be affected.

    With successful spine surgery and attentive post-operative care, he can have a spine that grows as normally as possible, with greater torso length than if he hadn't been untreated.

    Coping and support

    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
    • accommodations
    • 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 and perhaps another associated condition, as well. How will this affect my child long term? What do we do next? Boston Children's can connect you 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? Are there non-surgical options? 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 your child received while at Boston Children's.
    • parent-to-parent: Want to talk with someone whose child has been treated for congenital 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're 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.
  • For more than a century, orthopedic surgeons and investigators at Children’s Hospital Boston have played a vital role in the field of musculoskeletal research, pioneering treatment approaches and major advances in the care and treatment of ailments such as scoliosis, polio, tuberculosis, hip dysplasias and traumas to the hand and upper extremities.

    Our pioneering research helps answer the most pressing questions in pediatric orthopedics today—providing children with the most innovative care available.

    At Boston Children’s Orthopedic Center, we take great pride in our basic science and clinical research leaders, who are recognized throughout the world for their respective achievements. Our orthopedic research team includes:

    • five full-time basic scientists
    • 28 clinical investigators
    • a team of research coordinators and statisticians

    Clinical Effectiveness Research Center

    The Orthopedic Clinical Effectiveness Research Center (CERC) helps coordinate research and clinical trials to improve the quality of life for children with musculoskeletal disorders. This collaborative clinical research program is unique in the nation and plays an instrumental role in establishing—for the first time—evidence-based standards of care for pediatric orthopedic patients throughout the world.

    Major areas of focus for the CERC include:

    • spinal disorders
    • hip disorders
    • upper extremity disorders
    • brachial plexus birth palsy
    • trauma/fractures

    Spinal program

    Physicians in the CERC Spinal Program are active in several areas of ongoing basic and clinical research based at Children’s and the Harvard Orthopaedics Biomechanics Laboratory. Research topics include:

    • congenital scoliosis and idiopathic scoliosis
    • spondylolisthesis and spondylolysis
    • bone density studies of braced patients
    • in vitromechanical testing of lumbosacral fixation devices
    • computer-assisted strength analysis of vertebral metastases

    Ongoing studies

    Ongoing clinical studies include:

    Spine Studies Partially Sponsored by the Spinal Deformity Study Group: The mission and purpose of the Spinal Deformity Study Group (SDSG) is to create a means and forum whereby multi-center studies can be developed and conducted both efficiently and effectively. The SDSG is comprised of fifty national and international spine surgeons from 35 participating sites worldwide. Drs. Emans and Hresko are members of the SDSG.

    • (SDSG) Prospective Pediatric and Adolescent Scoliosis Study

    This is a prospective multi-centered study focused on the outcomes of pediatric and adolescent idiopathic scoliosis. The main purpose of this observational study is to develop a prospective comprehensive radiographic and clinical database on consecutively treated pediatric and adolescent scoliosis surgical cases to assess outcome measures in patients with operative idiopathic scoliosis being treated with current surgical techniques. A secondary objective is to obtain data on currently available surgical approaches to treat idiopathic scoliosis in the thoracic, thoracolumbar, and lumbar spine.

    • (SDSG) Prospective Pediatric and Adolescent Kyphosis Study

    The main objective of this prospective multi-center, observational study is to assess outcome measures in pediatric and adolescent patients with kyphosis, who are being treated non-operatively or operatively with current surgical techniques. Secondarily, data on currently available surgical approaches to treat pediatric kyphosis in the thoracic and/or thoracolumbar spine will be collected.

    • (SDSG) Prospective Study of Deformity Management and Pulmonary Function in Early-Onset Scoliosis

    The goal of this prospective multi-center study of children with “idiopathic” scoliosis is to document concomitantly: 1) control of spinal deformity, 2) growth of the thoracic spine longitudinally and transversely at a rate commensurate with the number of vertebrae involved and 3) increasing lung volume, absolute and relative to body size.

    • (SDSG) The Effect of Surgery on Sagittal Spino-pelvic Measures of Balance in Developmental Spondylolisthesis and Its Relation to Clinical Outcome

    The short-term goal of this prospective multi-center, observational study is to confirm the predictive value of sagittal spino-pelvic measurements in the surgical treatment of L5-S1 developmental spondylolisthesis. The long-term objective is to determine the optimal surgical treatment for L5-S1 developmental spondylolisthesis based on x-ray evaluation of sagittal trunk balance and functional outcome.

    Other Multicenter Studies of Importance: By combining efforts with other centers, the Division of Spine Surgery at Children’s in Boston is able to more quickly reach valid research conclusions applicable to clinical practice.

    • Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST)

    BrAIST is a multicenter randomized trial funded by the National Institutes of Health. Children’s Hospital Boston is one of 18 pediatric centers in North America participating in this clinical trial. The overall goal of this research is to determine whether bracing can slow or halt curve progression in patients with Adolescent Idiopathic Scoliosis (AIS), alleviating the need for surgical correction.

    The secondary aims of this study are to 1) investigate the effect of the diagnosis and treatment of AIS on the overall physical and mental well-being of subjects over time, 2) determine the relationship between bracing dose (wear time) and curve progression and 3) develop a predictive model for curve progression based on patient characteristics at their initial presentation and after bracing or watchful waiting.

    • Dual Growing Rod Instrumentation with Limited Fusion for the Treatment of Early Onset Scoliosis

    This multi-center project is sponsored by the Growing Spine Study Group (GSSG). Initially a retrospective study, it has become a prospective observational study with 14 clinical centers from around the world contributing data. The main goal is to determine how successful dual growing rods and Vertical Expandable Prosthetic Titanium Rib (VEPTR™) devices are in correcting progressive scoliosis in very young children.

    Secondarily, researchers want to know if children who undergo successful surgical intervention with these devices, to control their curve during growth, need to go on to receive a definitive final fusion, or if the hardware can be removed and the curve simply observed over time for possible progression.

    Recently, the study was modified to include a non-operative cohort of patients who are treated for early onset scoliosis with non-surgical methods, such as bracing and casting. Outcomes associated with operative and non-operative treatment will be compared in hopes that the most effective methods of correction can be identified.

    • Skeletal Complications in Neurofibromatosis Type 1 (NF1)

    This study is being conducted by researchers at Boston Children's Hospital and Beth Israel Deaconess Medical Center. The goal is to identify cell types associated with and responsible for skeletal defects and impaired bone healing associated with NF1.

    A large proportion of patients with NF1 display skeletal abnormalities such as alterations in bone size and shape, the presence of scoliosis, and a tendency to develop pseudoarthrosis. Tissue samples from patients with and without NF1 will be analyzed by microscopic examination. We hope the results will lead to a better understanding of the cells predominantly responsible for skeletal defects in NF1 and lead to new strategies for treating this patient population.

    Ongoing laboratory studies include:

    • Basic science studies
    • Biomechanical/instrumentation studies

    Orthopedic basic science laboratories

    Working in our labs are some of the leading musculoskeletal researchers in the nation. These labs include:

    National study on surgical outcomes

    Boston Children's Hospital is one of a select group of hospitals involved in a prospective national study to determine the surgical outcomes of patients with complex spinal deformities, including idiopathic scoliosis, early onset infantile scoliosis, kyphosis and spondylolisthesis. The Division of Spinal Surgery is actively involved in the development of non-operative, minimally-invasive and non-fusion techniques for treatment of spinal deformity.

    Children speak: What's it like to be a medical research subject?

    View a video of a day in the life of Boston Children’s Clinical and Translational Study Unit, through the eyes of children who are “giving back” to science.

  • Scoliosis surgery: from tears to smiles

    Fifteen-year-old Taylor Gomes approached her pre-operative appointment for scoliosis surgery as many teens might—in tears. “She came out of the appointment smiling. Not many people have that effect on Taylor,” says her mother Holly Gomes of Danvers, Mass.

    Holly credits Taylor’s orthopedic surgeon Michael Glotzbecker, MD, of Boston Children’s Hospital’s Department of Orthopedic Surgery, with her daughter’s 180-degree shift in attitude.

    A local pediatrician diagnosed Taylor with scoliosis when she was 8 years old, and measured her curve annually with back x-rays during her well-child appointments.

    By the time Taylor turned 14, her curve had progressed, and her pediatrician knew it was time to refer to a specialist at Boston Children’s.

    Enter Glotzbecker, who reviewed the teen’s options with the family. Initially, they opted to try a brace to prevent the curve from progressing. However, Taylor isn’t your average scoliosis patient. In addition to her spinal curve, Taylor’s health is compromised by anxiety, which flares up when she feels confined.

    She was unable to comply with the brace; after the initial fitting, it sat in her closet.

    By February 2013, Taylor’s curve had progressed to 55 degrees, and x-rays indicated she was still growing, which meant it was likely that the curve would worsen as her height increased.

    “I was overwhelmed,” confesses Taylor, who now admits to major anxiety before surgery.

    Glotzbecker encouraged the teen to email him with any questions, and Taylor made wise use of the privilege, asking him questions like when she would be able to resume dance or other activities. “He always gave me a quick answer. It was very easy to talk to him about what made me nervous.”

    Taylor also turned to other online resources, using “youtube.com” to watch videos about scoliosis and connect with other teens with the condition, which helped her learn how to handle the situation.

    When the big day arrived, Taylor and her parents felt as ready as they could be. The six-hour surgery went according to plan. The entire scoliosis team helped Taylor manage her weeklong hospital stay with minimal anxiety. Her hospital nurses and physical therapists explained the details of her recovery step-by-step, so Taylor knew what to expect when it was time to sit up in a chair and take her first steps.

    Several days after her surgery, another meeting between Glotzbecker and Taylor ended with the teen in tears. “She started crying, much like she had when we started to talk about surgery,” recalls Glotzbecker. “I asked her what was the matter, and she said, ‘Nothing…I am just really happy’.”

    A few weeks after surgery, Taylor is confident and smiling. The teen grew two inches after the surgery to correct the curve and is thrilled to have passed her mother in height. She plans on following Glotzbecker’s orders and easing back into dance lessons three months after surgery and returning to a full program of ballet, tap and jazz six months after surgery.

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    Testing their metal: Titanium rib procedure gives patients room to breathe

    When you meet 4-year-old Zoe Lambert, the first thing you notice is her left shoulder. It sits higher than the right one and makes it look as though she got halfway through a child's shrug of "I don't know" before giving up.

    If you knew the health problems she's had in her short life, however, and realized that a metal rib in her chest allows her to bend at the waist and wave at you through her

    legs with an upside-down smile, her raised left shoulder would take on greater significance. Instead of an indifferent "I don't know," you might actually see the result of her severe birth defects as expressing a defiant, "What else have you got?"

    Zoe's mother Arlene had a complication-free pregnancy, and none of her seven ultrasounds revealed anything abnormal. But when Zoe was delivered at a hospital in their small hometown of Plymouth, Pa., it took her grandmother, Johanna, only one look to realize that all the prenatal tests had missed something very significant. Johanna says Zoe looked pasty and had a webbed neck, and scans done in the hour after her birth revealed that, in Johanna's words, "the hospital had never seen anything like Zoe before." Less than 24 hours later, she was flown to a hospital in Hershey, Pa., where she was diagnosed with VACTERL syndrome, an extremely rare collection of birth defects. When combined, the worst of the defects was likely to cause Zoe's rib cage to collapse in on itself, a situation that would prevent her lungs from growing and would most likely end up suffocating her.

    Alphabet soup

    VACTERL is an acronym for vertebral, anal, cardiac, tracheal, esophageal, radial (lower arm bone) and/or renal (kidney) and limb—making Zoe's problems sound more like the index of a medical textbook than the problems of a single patient. She had atrial and ventricular septal defects (holes between the upper and lower chambers of her heart, which have since closed on their own), has only one kidney, and her intestines are twisted. But the "V" for vertebral was the most troubling letter in the acronym for little Zoe. She was missing the three vertebrae containing the nerves that provide bowel and bladder control; two additional vertebrae in her neck were fused; she had severe scoliosis (curvature of the spine); three hemivertebrae (or missing pieces of spine); and several ribs that were fused, plus one rib that hadn't formed at all.

    From the day she was born, Zoe needed extensive medical treatment. When she was 6 months old, some of her vertebrae were surgically fused in an effort to lock her spine in place and stop the progress of her scoliosis. By the time she turned 2, however, it was obvious that the spinal fusion had failed and that the progress of Zoe's curvature was impairing her lung capacity and causing heart problems. The situation was quickly becoming life threatening.

    A doctor in Hershey told Arlene that her daughter's only hope was an investigational procedure known as a titanium rib implant. "When I heard the word 'investigational,' I was upset, but I realized this was the only thing that would help Zoe," says Arlene.

    The Lamberts did some research on the Internet and found that the surgery had been developed by Robert Campbell, MD, an orthopaedic surgeon at Christus Santa Rosa Children's Hospital in Texas. Instead of traveling to and from Texas, they decided to come to Boston Children's Hospital, where John Emans, MD, chief of the Division of Spinal Surgery, and his colleagues had been hand-selected by Campbell as the second team in the world to perform the innovative surgery.

    Braces for the chest

    The idea behind the titanium rib procedure is deceptively simple: it performs the same basic function on a patient's chest and ribs that braces perform on teeth. The patient's fused ribs are first separated, and then a lightweight titanium rod is attached vertically to the ribs and/or spine to act as a stabilizer and keep the bones in place. The rod is lengthened regularly, expanding very much like a curtain rod, to keep the fused ribs apart, enlarge the chest, keep the spine more aligned and allow the chest and lungs to continue to grow.

    With the help of a multi-disciplinary team that includes specialists from General Surgery and Pulmonology, Emans has performed more than a dozen initial titanium rib operations and many subsequent lengthenings. These experiences, combined with those of Campbell's team, have shown that the surgery works well for major chest and rib abnormalities such as severe congenital rib fusions and scoliosis. And unlike spine fusions, a common procedure for people with scoliosis, the titanium rib procedure allows for more growth of the chest and spine. "For children who have small chests as a result of these problems, this can be a life-saving procedure," says Emans. "And instead of having the spine of a 2-year-old their whole life as a result of fusion surgery, the titanium rib allows them to grow more than they otherwise would."

    What surgeons don't know at this point is how their patients will fare in the long run. "It will take a number of years—maybe as many as 15—to see how these children do," says Emans. "Many of them were under the age of 2 at the time of the procedure, so we'll need to wait until they have stopped growing to fully evaluate the results."

    Campbell, who has performed the operation on more than 130 children, feels that surgeons have only touched the surface of the titanium rib procedure's potential. "It works well for children with VACTERL, and is a superb way to replace ribs, especially in kids with cancer of the chest wall," he says. "But I think we're going to be surprised by how many uses this surgery will have in the future. For the first time, we're able to treat three-dimensional problems with three-dimensional thinking and techniques."

    Just as Campbell advised Emans on his titanium rib procedures, he sees Emans performing the same function for surgeons at other qualified hospitals throughout the country. "Dr. Emans will serve as a mentor so other programs can begin performing this surgery," says Campbell. "He is a superb teacher and never ceases to amaze me with his ingenuity."

    The pair are currently recruiting patients for an FDA-mandated clinical trial that is expected to come to an end later this spring, and Emans hopes that the surgery will be generally available at qualified centers around the country by the end of the year.

    Straightening the S

    Living within a few miles of a qualified center has been a blessing for Susan Wilson and her daughter, Samantha. Shortly after Samantha's birth, Timothy Hresko, MD, assistant in Orthopaedic Surgery at Children's, found that she was suffering symptoms of respiratory distress and quickly realized that her chest and lungs had stopped growing. He diagnosed her with congenital kyphosis, an abnormal, backward curvature of the spine. This was compounded by the fact that she also had short ribs, some of which were fused while others had large spaces between them.

    In 2000, Emans performed titanium rib surgery on both the right and left sides of Samantha's chest. Since then, Susan has noticed a vast improvement in her daughter's breathing and is amazed how different Samantha looks. "Before the operation she was shaped like an 'S' and doctors said she would never sit straight or walk well," she says. "But now she stands straight and does everything a typical 3-year-old can do."

    Because of the other physical problems related to her VACTERL, Zoe Lambert is not yet able to do all of the same things as other 4-year-olds. She will need intensive rehabilitation to learn how to control her bowels and bladder, and her twisted intestines continue to cause problems that have led her to be rushed to many hospitals, including Children's, for emergency treatment. But Emans' work has taken what were the most dangerous of her problems—those of her spine and ribs—and moved the "V" for vertebral to the bottom of a long list of concerns.

    Zoe now tests near the normal range on physical therapy exams and is able to climb on and off chairs—something she couldn't do before surgery. It is the simple things, though, that have made the biggest difference in Zoe's life and the lives of her mother and grandparents. Every year for more than a decade, the Lamberts have gone to the beach for summer vacation, and last summer, Zoe, who has always loved her trips to the ocean, was finally able to get in the water and play with all the other kids. Zoe's mother put her in bathing suits and little bikinis, the outline of the titanium rod showing faintly through the skin of her small body. Asked to describe her feelings at seeing her daughter grow up and be able to enjoy things like playing at the beach, Arlene states it simply: "She's here. And if it wasn't for Dr. Emans and the surgery, she may not have been."

    show_more_end

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