What is Nager Syndrome?

Written by Medicover Team and Medically Reviewed by Dr Sravya Challa , Plastic Surgeons

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Nager Syndrome is a rare genetic condition that affects the way a baby's face, hands and arms develop before birth. Nager Syndrome, also known as Nager Acrofacial Dysostosis. The changes it causes can be different for every person, but there are a few common Nager Syndrome features doctors look for.

People with Nager Syndrome may have:

These differences can sometimes cause challenges with eating, breathing, or hearing. Many babies may need help feeding or special care after birth.

Nager Syndrome doesn't affect the way a child thinks or learns. Kids with this condition can go to school, make friends, and enjoy life just like anyone else.

While there's no cure, treatments like surgery, hearing aids, and therapy can make a big difference. If you're worried about your baby's development, talking with a doctor is the best first step.

What Are the Nager Syndrome Symptoms?

Nager syndrome is a rare condition that mainly affects how the face and limbs develop. People with Nager syndrome often have certain features that are noticeable at birth.

These Nager Syndrome symptoms can vary a lot from person to person. Some may have mild changes, while others may have more serious differences.

Here are the signs of Nager Syndrome:

Common Facial Features

Ear Differences

Arm and Hand Features

Other Possible Symptoms

It's important to remember that while these features can be challenging, many children with Nager syndrome grow up with the help of surgeries, therapies, and support from doctors. If you think your child has any of these signs, talking to a specialist early can help plan the best care.

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What Are the Nager Syndrome Causes?

Nager syndrome is a rare condition that mainly happens because of changes in a person's genes. These changes affect how certain parts of the body develop before birth, especially the face, arms, and hands. Most of the time, Nager syndrome is not something parents cause or can prevent, it simply happens due to genetic changes.

Key reasons for Nager Syndrome include:

It's important to know that Nager syndrome is not caused by anything a mother did during pregnancy, like diet, stress, or illness. Doctors often use genetic testing to confirm the cause.

Because it's genetic, families who have one child with Nager syndrome might want to talk with a genetic counsellor to understand their chances in future pregnancies. While there's no way to stop these gene changes, early medical care and therapy can help manage the condition.

Who Does Nager Syndrome Affect?

Because these differences can affect breathing, eating, or hearing, they might need special medical care, surgeries, or therapies.

With early help and ongoing support, many kids with Nager syndrome can learn to do daily activities and live fulfilling lives. Doctors, therapists, and families work together to make sure each child gets the care they need.

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How Is Nager Syndrome Diagnosed?

Diagnosing Nager Syndrome often starts when doctors notice certain facial or limb differences at birth or even before birth through special scans. Getting the right diagnosis is important so families understand what to expect and plan care early.

Doctors will look carefully at the baby's features and medical history. They may also ask about any family history of similar conditions. A physical exam helps them see things like underdeveloped cheekbones, a small jaw, or limb differences.

To confirm the diagnosis and understand it better, doctors may recommend:

These tests help rule out other conditions that look similar.

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How Is Nager Syndrome Treated?

Nager Syndrome is a rare condition that affects how the face, hands, and arms develop. While there is no single cure, Nager Syndrome treatment focuses on managing the specific challenges each person faces. Care is usually provided by a team of doctors working together to support overall health and development.

Here are the Nager Syndrome treatment options available:

Tracheostomy

Some children with Nager Syndrome have trouble breathing because their jaw or airway is too small. A tracheostomy is a procedure where doctors make a small opening in the neck to place a tube directly into the windpipe. This helps them breathe more easily and safely, especially at night or when they're sick.

It might sound scary, but many families find that it gives their child freedom to breathe without constant worry. The tube can be cleaned and changed as needed, and doctors teach parents how to care for it at home.

Gastrostomy

Eating and swallowing can be hard for kids with Nager Syndrome due to small jaws or other mouth issues. A gastrostomy is when doctors place a small feeding tube directly into the stomach through the belly. This helps children get the nutrition they need to grow and stay healthy without struggling to eat by mouth.

It can feel like a big decision, but many families find relief knowing their child is getting enough food and fluids safely. Over time, some children learn to eat better by mouth, but the tube can stay in place as long as it's needed.

Tympanostomy

Children with Nager Syndrome often have ear problems because of differences in how their ears are shaped. This can lead to fluid buildup, infections, or hearing loss. Tympanostomy is a simple procedure where tiny tubes are placed in the eardrums to help drain fluid and prevent infections.

This surgery is quick, usually done under light anesthesia, and kids can go home the same day. It helps them hear better and reduces the number of painful ear infections.

Craniofacial Surgery

Nager Syndrome affects the shape and growth of the face, jaws, and sometimes the ears. Craniofacial surgery helps correct these differences to improve breathing, eating, hearing, and appearance. These surgeries are usually planned carefully with a team of doctors over many years.

Doctors might lengthen the jawbone to help with breathing, reshape parts of the face for balance, or repair a cleft palate if present. Every child's plan is unique and depends on their needs.

How to manage the symptoms of Nager syndrome?

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When to See a Doctor for Nager Syndrome?

If you think your child might have signs of Nager Syndrome, it's important to talk to a doctor early. Early care can help manage symptoms better and plan for any treatments or support they may need.

Look out for these signs that mean it's time to see a doctor:

If you see any of these issues, don't wait to ask for help. Doctors can explain what's happening, plan any needed surgeries or therapies, and connect you with specialists. Remember, early visits can make a big difference in your child's comfort and health.

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What is the Recovery Process After Nager Syndrome Treatment?

Recovering after treatment for Nager Syndrome takes time and teamwork. It often involves different specialists who help your child grow and thrive.

Here's what families can expect:

Parents play a big role in recovery. Staying on top of appointments, supporting at home, and working closely with doctors all help ensure the best outcome.

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How do you prevent Nager Syndrome?

Prevention:

Possible Complications:

Early care and teamwork with specialists can reduce these complications and help children lead happier, healthier lives.

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Our Experience in Treating Nager Syndrome

At Medicover, we understand that Nager Syndrome can be challenging for both children and their families. We're here to support you every step of the way with compassionate, specialised care.

We've helped many families manage this rare condition through:

We know this journey can feel overwhelming. That's why we're dedicated to caring for both your child and your family with patience, skill, and heart.

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