Congenital Scoliosis

Overview

Congenital scoliosis is a sideways curve of the spine that is present at birth. It happens when one or more vertebrae (the small bones of the spine) do not form normally in the womb. The curve may be mild, or it may get worse as a child grows. It is different from the common type of scoliosis that appears in older children and teenagers.

It is uncommon. Congenital scoliosis is one of the less common types of scoliosis in children.

It affects babies and children. It is often found at birth or in early childhood. Some children also have differences in the heart, kidneys, or spinal cord, so doctors may check for these.

Symptoms

Common symptoms

• A sideways curve of the spine that can be seen or felt
• One shoulder may look higher than the other
• The head may look slightly tilted or not centered over the body
• One hip may be higher, or the waist may look uneven
• The ribs on one side may stick out more
• Clothes may fit unevenly

Symptoms in children

• In babies, a curve may be seen when lying down or sitting
• Some babies may have trouble sitting straight or rolling over, but not all
• Often there is no pain
• A curve may become more noticeable during growth spurts
• Sometimes other health issues are found, such as heart or kidney problems

Symptoms in older adults

• Adults born with congenital scoliosis may have back pain or stiffness, especially with large curves
• Some people feel tired or short of breath with activity if the curve affects the chest
• Many adults with mild or treated curves live full, active lives
• New weakness or numbness in the legs is not normal and needs urgent care

Causes

Main causes

• Problems with the way vertebrae form in the womb
• Sometimes a vertebra is partly formed, split, or joined to another
• The exact cause is usually unknown
• Sometimes it is linked to other birth differences or rare genetic conditions

Risk factors

• Having a family history of scoliosis or spine problems
• Other birth differences, especially in the heart, kidneys, or spinal cord
• Some rare genetic syndromes
• It is not caused by posture, exercise, diet, or lifting

When to see a doctor

See a doctor urgently if:

• New weakness or numbness in the legs or feet
• Loss of bladder or bowel control
• A fever with back pain
• New or worsening trouble breathing
• A curve that changes quickly or severe pain

Book a routine appointment if:

• You notice a sideways curve of the spine
• One shoulder or hip looks higher than the other
• Clothes fit unevenly or the waist looks uneven
• A school check or sports physical notes a curve
• Your child has a known spine difference and you have questions

Diagnosis

A doctor will examine the back, shoulders, hips, and nerves. They will ask about growth and health. Imaging scans are used to see the shape of the spine and find any related problems. Children are usually referred to a specialist team.

Tests that may be done

• X-rays to measure the curve
• MRI scan (a detailed picture using magnets) if the spinal cord or nerves need checking
• Ultrasound or other scans of the heart and kidneys if needed
• Blood tests or genetic tests in some cases

What to expect at your appointment

You may be seen by a children's orthopaedic team (bone and spine specialists). They will measure the curve and decide how often to check it. Visits may include X-rays and growth checks. Ask questions; it is okay to take notes.

Treatment

The aim is to watch the curve, keep the spine and body healthy, and step in if the curve is getting worse or causing problems. Not every child needs surgery. Care is planned for each child.

Self-care at home

• Keep regular follow-up appointments, even if the curve seems stable
• Encourage normal play and activity as advised by the care team
• Ask the school for support if your child needs help with seating, PE, or carrying bags
• Keep a simple record of any new symptoms, such as pain, weakness, or changes in walking
• Ask your pharmacist or care team before using pain relief

Medical treatments

Doctors may use regular X-rays and check-ups to watch the curve. Physiotherapy can help with movement, strength, and comfort. A brace may be tried for some flexible curves, but it does not fix curves caused by abnormally shaped vertebrae. If the curve is large, getting worse, or pressing on the spinal cord or organs, surgery may be discussed. Surgery can straighten the spine, stop it from curving more, or relieve pressure. The best plan depends on the child's age, growth, curve size, and other health needs.

When is surgery considered?

Surgery may be considered if the curve is large or getting worse, if it is pressing on the spinal cord or nerves, or if it is affecting the heart or lungs. The timing is chosen carefully as children grow. Your specialist team will explain the benefits and risks.

Living with this condition

Many children with congenital scoliosis go to school, play, and take part in family life. Some need extra check-ups or changes at school. As a parent, you can help by keeping appointments and sharing any worries with the care team.

Lifestyle tips

• Stay active with walking, swimming, or other gentle exercise your care team approves
• Use a well-fitting backpack and avoid carrying more than needed
• Keep up with school and social activities
• Avoid smoking and second-hand smoke to protect lung health
• Get enough sleep and rest during growth spurts

Diet and exercise

Eat regular balanced meals with plenty of vegetables, fruit, and protein. Calcium and vitamin D help bone health; ask your care team if you are unsure about your child's diet. Exercise helps strength and confidence. Contact sports or high-impact activities may need to be checked with the spine team.

Mental health and emotional wellbeing

A visible curve or many clinic visits can affect body image, confidence, and mood. Children and parents may feel anxious. Talk to the care team; counselling can help. If you or your child are in crisis or thinking of self-harm, contact your local emergency services or a crisis support line right away.

Prevention

Congenital scoliosis cannot be prevented. It develops before birth and is not caused by anything the mother did or did not do during pregnancy.

Vaccines

There is no vaccine that prevents congenital scoliosis.

Screening programmes

There is no routine screening test for all children. If you notice a curve, uneven shoulders, or a change in how clothes fit, ask a doctor. Children with congenital scoliosis may need checks of the heart, kidneys, and spinal cord because related differences can occur.

Complications

If left untreated

• The curve may get worse as the child grows
• A large curve can affect the heart and lungs
• Pressure on the spinal cord or nerves can cause weakness, numbness, or bladder and bowel problems
• Some people have back pain or stiffness
• A visible curve can affect body image and confidence

Long-term outlook

Most children with congenital scoliosis can be cared for well. Many mild curves stay stable. When a curve needs treatment, early specialist care can reduce problems. With regular check-ups and support, most people lead active and full lives.

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