How serious is craniosynostosis in babies?

Each baby born with craniosynostosis is different, and the condition can range from mild to severe. Most babies with craniosynostosis are otherwise healthy.
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Is craniosynostosis life threatening?

Craniosynostosis can occur by itself or as a part of certain craniofacial (head and facial) syndromes. If left untreated, craniosynostosis can lead to serious complications, including: Head deformity, possibly severe and permanent. Increased pressure on the brain.
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Do all babies with craniosynostosis need surgery?

Helmet therapy: Babies with mild craniosynostosis may wear a special medical helmet. This helmet gently reshapes the skull over time. Surgery: Many babies need head surgery to reshape the skull, relieve increased intracranial pressure and allow the baby's brain room to grow and develop properly.
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How is craniosynostosis treated in babies?

Treating craniosynostosis usually involves surgery to unlock and bones and reshape the skull. Historically, craniosynostosis has been treated using surgical methods that involve an incision from ear to ear and the removal, reshaping, and reattachment of affected bones. Sometimes this is still the best option.
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Does craniosynostosis affect brain development?

Craniosynostosis is a condition in which the sutures in a child's skull close too early, causing problems with head growth. Premature closure of the sutures may also cause the pressure inside of the head to increase, which can affect brain development.
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Craniosynostosis and its treatment | Boston Children’s Hospital



What is the life expectancy of someone with craniosynostosis?

People with Crouzon syndrome have a normal life expectancy. Most children with this condition are unaffected intellectually. However, it can alter the shape of the face and cause vision and hearing problems.
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Do babies with craniosynostosis cry a lot?

Sleepiness or baby is less alert than usual. Very noticeable scalp veins. Increased irritability or fussiness. High-pitched cry.
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What is the success rate of craniosynostosis surgery?

The data support this: in 2020 alone, more than 50 craniosynostosis procedures have been performed, with a success rate of 99%, relatively fast recovery times, and hardly any complications.
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Is craniosynostosis a major surgery?

All centers still offer traditional surgery, particularly for babies who are diagnosed at later ages or babies who have particular types of craniosynostosis with more extensive deformities. The surgery is immensely safer than it was in previous decades, but it is a longer overall procedure — it can take six hours.
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Does craniosynostosis cause mental retardation?

Chi-square analysis showed no significant differences between rates of retardation or learning disorders based on surgical status. Conclusions: Most children with nonsyndromic craniosynostosis obtain developmental quotients within the normal range in infancy.
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Does craniosynostosis get worse with age?

The deformity usually gets even more noticeable over time. The head shape depends on the location of the fused skull suture. For example, in the most common type, sagittal synostosis, the skull becomes long and narrow with a broad forehead and a pointy shape in the back.
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How long is recovery after craniosynostosis surgery?

The bones will be healed 6 weeks after surgery but trauma to the head should be avoided. Parents sometimes notice small areas of swelling 8-12 months after surgery as the plates begin to dissolve. Patients undergoing surgery for craniosynostosis are typically seen annually by their surgeons until they are done growing.
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How does a baby get craniosynostosis?

Syndromic craniosynostosis is caused by certain genetic syndromes, such as Apert syndrome, Pfeiffer syndrome or Crouzon syndrome, which can affect a baby's skull development. These syndromes usually also include other physical features and health problems.
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Is craniosynostosis surgery safe?

The surgery is very safe and produces excellent results. There are several surgical options for treating craniosynostosis, depending on which type it is. It's usually best to perform surgery at just a few weeks to a few months of age, since the skull bones are the softest and most malleable then.
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Can craniosynostosis cause learning disabilities?

In 2015, Dr. Matthew Speltz's team published results indicating that school-age children with the most common form of craniosynostosis are more likely to suffer developmental delays and learning problems than children who don't have the disorder.
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How common is craniosynostosis?

Craniosynostosis is common and occurs in one out of 2,200 live births. The condition affects males slightly more often than females. Craniosynostosis is most often sporadic (occurs by chance) but can be inherited in some families.
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How long does craniosynostosis surgery take?

The procedure generally takes approximately two to three hours. After surgery, your child will stay at the hospital for recovery and follow-up care. Most children stay for an average of three to five days.
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Does craniosynostosis hurt?

In general, craniosynostosis is not a painful condition. However, if there is increased pressure on the brain, it can cause: Abnormalities affecting the face and hands. Headaches.
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Is craniosynostosis genetic?

In extremely rare cases, primary isolated craniosynostosis is genetic and in such cases is usually inherited as an autosomal dominant trait. Most cases of primary craniosynostosis that occur as part of a syndrome are also inherited as autosomal dominant traits.
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Can craniosynostosis come back after surgery?

Re-synostosis after standard surgical procedures for nonsyndromic craniosynostosis is a rare event, which can occur at the same suture or rarely in adjacent sutures.
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What is a mild case of craniosynostosis?

Craniosynostosis is a condition in which the sutures (growth seams) in an infant's skull close too early, causing problems with normal brain and skull growth. Non-syndromic craniosynostosis is a non-inherited, isolated finding without related anomalies such as disorders of the limbs, ears or cardiovascular system.
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Can kids with craniosynostosis play sports?

OBJECTIVE Craniosynostosis (CS) affects about 1 in 2500 infants and is predominantly treated by surgical intervention in infancy. Later in childhood, many of these children wish to participate in sports. However, the safety of participation is largely anecdotal and based on surgeon experience.
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Can craniosynostosis cause behavior problems?

In unilateral coronal craniosynostosis, problems with intelligence, speech, learning, or behavior have been reported in 52% and 61% of children affected on the left and right sides, respectively6).
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What doctor treats craniosynostosis?

Craniosynostosis requires evaluation by specialists, such as a pediatric neurosurgeon or a specialist in plastic and reconstructive surgery. Diagnosis of craniosynostosis may include: Physical exam.
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What syndromes are associated with craniosynostosis?

Syndromes most frequently associated with craniosynostosis include Apert, Crouzon, Pfeiffer, Carpenter, and Saethre-Chotzen [1]. Syndromic craniosynostoses are often sporadic and are the result of de novo autosomal dominant mutations involving fibroblast growth factor receptors (FGFRs) and TWIST genes.
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