Congenital Scoliosis

What is congenital scoliosis?

Congenital scoliosis is a side-to-side curvature of the spine caused by vertebrae (the bones in your spine) not forming as expected during fetal development. It’s not a common type of scoliosis — it accounts for only 10% of diagnosed cases.

Your child’s vertebrae could fuse together (connect) or have a different shape (like triangles instead of rectangles). Their spine may try to compensate for the bone growth abnormalities by curving above or below the affected vertebrae to hold your child’s torso upright.

You might first notice congenital scoliosis when putting clothing on your child. For example, the buttons on their shirt may not evenly match the left to the right side. A shirt might twist around your child’s torso or one leg of their pants may be longer than the other. It may seem like the clothing was manufactured wrong or went through the wash incorrectly.

This condition is present at birth and may progressively get worse as your child grows. Children with congenital scoliosis are more at risk of severe curves than other types of scoliosis. This means that your child will likely need surgery in their first few years of life to prevent complications.

What are the types of congenital scoliosis?

There are different types of scoliosis based on how your child’s vertebrae formed during development:

• Incomplete vertebrae formation (hemivertebrae): Part of a vertebra didn’t form completely. This makes your child’s spine grow at an angle. It can affect one vertebra or many.
• Failure of vertebrae separation (segmentation): Early during development, your child’s spine is one column of tissue that should separate itself into different bones that become the vertebrae. In children with segmentation scoliosis, their vertebrae don’t separate from that original column and fuse together correctly.
• Combination (hemivertebrae and bars): There are groups of fused bone that didn’t separate and bones that didn’t form as expected (malformations). This type is usually the most severe.

What are the symptoms of congenital scoliosis?

The signs of congenital scoliosis include:

• Slanted shoulders.
• An uneven ribcage.
• Tilting hips.
• Difficulty standing up straight.

Severe curves may cause nerve or spinal cord damage. These can cause neurological symptoms, including:

• Muscle weakness.
• Numbness (arms or legs).
• Loss of coordination or difficulty walking.

Some children experience pain or discomfort — it depends on how severe the curves in their spines are. Mild curves usually don’t cause any pain.

What causes congenital scoliosis?

A bone growth abnormality in the spine causes congenital scoliosis. This happens before your child is born (usually in the first six weeks of embryonic development). Experts aren’t sure exactly what causes this abnormal bone growth. Research suggests it may happen due to environmental or genetic factors.

What are the complications of congenital scoliosis?

It’s common for children diagnosed with congenital scoliosis to experience heart, lung or kidney problems in addition to a curved spine. These may be life-threatening.

Other complications may include:

• Difficulty breathing (respiratory problems).
• Mobility challenges (limited range of motion and difficulty performing certain activities).
• Paralysis.

Many children diagnosed with scoliosis experience self-esteem and confidence issues. The curve in their spine can make your child feel and look different. This can significantly impact their mental health and emotional well-being. For example, your child might not want to wear a bathing suit or tight clothes. This might prevent them from participating in activities they may enjoy.

How is congenital scoliosis diagnosed?

A healthcare provider will be able to see signs of congenital scoliosis during a pregnancy ultrasound. An official diagnosis usually happens during your child’s newborn examination.

While congenital scoliosis is present at birth, your child might not receive a diagnosis until symptoms become more apparent as they grow, usually before adolescence and growth spurts. A healthcare provider will do a physical exam and take imaging tests (X-ray, CT scan, MRI or ultrasound) to get a better view of your child’s bones and check for additional complications. They may use a measuring tool called a scoliometer to measure the size of the curve.

Can you correct congenital scoliosis?

Treatment for congenital scoliosis can help straighten and stabilize the spine. Your child’s provider may recommend:

• Wearing a brace or a cast.
• Surgery.

Your child’s provider will monitor and evaluate the type of congenital scoliosis, the severity of the curve and if complications are present. They’ll recommend treatment options specific to your child’s situation.

Congenital scoliosis surgery

Not all cases of congenital scoliosis need surgery, but many do. Since your child is still growing, the curve could get worse as they get older. Severe curves require surgery.

Your child’s provider may suggest surgery if the curve in their spine:

• Gets worse.
• Is at a severe angle.
• Causes neurological symptoms, pain or discomfort.
• Affects their growth and development.

The following surgical procedures treat congenital scoliosis:

• Spinal fusion: A surgeon will connect abnormally shaped or curved vertebrae bones into a single bone. This procedure corrects the curve and prevents it from getting worse.
• Vertebra removal: This procedure removes a hemivertebra (malformed spinal bone). A surgeon will stabilize your child’s spine with implants or spinal fusion.
• Rod surgery: A surgeon will add a “growing” rod to your child’s spine that they can make longer every six to eight months with minor surgery to adapt to your child’s growing body. When your child finishes growing, a surgeon will remove the growing rod and stabilize their spine with spinal fusion.

Surgeons will choose the safest and most effective procedure to improve your child’s quality of life. Many children experience a good outcome after surgery. Most children can leave the hospital within a few days after surgery. They rarely need to wear a brace for a short period of time following the procedure.

Can congenital scoliosis be prevented?

There isn’t a way to prevent congenital scoliosis. A healthcare provider and/or surgeon may suggest ways to prevent the curve in your child’s spine from getting worse with different treatment options.

What can I expect if my child has congenital scoliosis?

Congenital scoliosis is a challenging condition to manage. Since the spine curve happens so early in a child’s life, their bones still need to grow. This means that there’s a high risk that the curve will get more severe as your child gets older, which leads to surgery. Providers can’t predict how their spine will handle growth, so you’ll need to schedule regular appointments with your child’s provider so they can measure and monitor it for complications.

Surgery treats severe curves. It’s normal for children who underwent spinal fusion surgery to be shorter than their peers. Surgery like spinal fusion connects vertebrae together. This can stop growth in that portion of your child’s spine. If you have any questions about what to expect after surgery, talk to your child’s surgeon.

If you notice your child has trouble with their emotional well-being, consider talking to a mental health professional.

What’s the life expectancy for congenital scoliosis?

A severe spine curve associated with congenital scoliosis may affect your child’s life expectancy (how long they live) if they experience complications that affect their heart, lungs or kidneys. However, not all congenital scoliosis cases are severe.

Your child’s outlook is as unique as they are. Their healthcare provider will give you the most up-to-date information about their situation since no two cases are the same.

When should my child see their healthcare provider?

If your child didn’t receive a congenital scoliosis diagnosis as a newborn but you notice symptoms of scoliosis, visit their pediatrician for an evaluation.

If you know your child has congenital scoliosis, you’ll need to schedule regular appointments to see their healthcare provider. During these appointments, a provider will observe and measure the curve and tell you which treatments your child will need. If your child mentions discomfort or pain, let their provider know.

What questions should I ask my child’s healthcare provider?

Questions you may want to ask your child’s provider include:

• What type of congenital scoliosis does my child have?
• Does my child need surgery?
• What will my child’s recovery look like?
• How do I take care of my child after surgery?
• Will my child be able to play sports or participate in physical activities with scoliosis?

A note from Cleveland Clinic

Your child has a lot of growing to do, and you might wonder how a congenital scoliosis diagnosis will affect them. Since providers can’t predict exactly how scoliosis will affect your child, they’ll schedule regular checkups to monitor the curve to see how it changes as your child gets older.

There’s some chance your child may need surgery to treat congenital scoliosis since the curve appeared early and they’re still growing. Their care team is available to answer any questions you might have before and after the procedure to give you peace of mind. After a little downtime for treatment and recovery, children with scoliosis can still play and enjoy childhood activities with their friends and classmates.