We know anything affecting your baby’s head can be scary. If your child is diagnosed with craniosynostosis or plagiocephaly, our experienced, specialized team of pediatric plastic surgeons and neurosurgeons will collaborate with you, your family and other members of your baby’s multidisciplinary care team to create a customized treatment plan.
At AdventHealth for Children, you’ll have access to the latest advances in treating craniosynostosis and plagiocephaly. And you’ll be supported at every turn by caring, dedicated professionals with the same goal in mind: helping your child thrive.
Our pediatric plastic surgeons are ready to help your child smile again. To get started, request an appointment and our Nurse Care Coordinator will contact you.
Surgical Care You Can Count On
Our team of pediatric and reconstructive surgeons includes physicians who specialize in treating craniosynostosis. Find a surgeon near you and set your child on a treatment path that’s right for them.
Dr. Raj Sawh-Martinez, Medical Director of Pediatric Plastic Surgery at AdventHealth for Children, discusses craniosynostosis and plagiocephaly, how these conditions are diagnosed and the best treatment options for parents to consider.
Understanding Craniosynostosis
Craniosynostosis is a rare birth defect that affects 1 in every 2,200 live births. It happens when one or more of the joints in your baby’s skull fuse together before the brain finishes developing. Although brain damage can happen in severe cases, early diagnosis and treatment can help ensure the very best results, including cognitive normalcy and an unaffected appearance. Children with craniosynostosis may also experience problems with their eyes and ears.
At AdventHealth for Children, we’re proud to offer the most innovative, evidence-based and proven treatments that lead to better outcomes, including surgical care, therapy and minimally invasive approaches. But even more important is that every decision we make centers around your baby. Each of our team members administers medicine and care from the heart. We’ll use our experience and compassion to answer your questions and guide your family to the best treatment plan for your baby.
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There are no precise causes of craniosynostosis. While there’s likely some genetic component, it is also possible that the condition is linked to how a baby was positioned in the womb. What is important to remember is that there is nothing you did as a parent to cause this condition.
Craniosynostosis can be syndromic (involved in a named ‘syndrome’ with other findings) or non-syndromic (single suture involvement).
Syndromic Craniosynostosis
Syndromic craniosynostosis can often have a clear genetic cause. Children with this condition also have other health issues and concerns. Our care team will work across disciplines to address your child’s unique needs from every angle.
Syndromic craniosynostosis may include the following:
Muenke Syndrome — Also known as FGFR3-associated coronal synostosis syndrome, it is a genetic disorder characterized by the anomalies of the skull and face. Gene mutations are the cause of these skull and face differences.
Saethre-Chotzen Syndrome — It is a genetic disorder characterized by varied and broad skull, face and limb anomalies. TWIST gene mutations are responsible for causing the early fusion of the skull.
Apert’s Syndrome — Also called acrocephalosyndactyly, it is a genetic syndrome characterized by anomalies of the skull, face and limbs. Gene mutations are responsible for causing the early fusion of the skull, hand and feet bones.
Crouzon Syndrome — Also known as craniofacial dysotosis, it is a genetic syndrome in which the seams of the skull abnormally fuse. This affects the shape of the head and face. It is the most common type of syndromic craniosynostosis.
Pfeiffer syndrome — Also known as acrocephalosyndactyly Type V, it is a genetic disorder characterized by the anomalies of the skull, face and limbs. Gene mutations are responsible for causing the early fusion of the skull, hand and feet bones. Craniofacial differences are similar to those seen in Apert syndrome.
Signs and Symptoms of Craniosynostosis
Signs of craniosynostosis may be detected during pregnancy or immediately after birth and include the following:
A bulge in the baby’s soft spot
No visible soft spot
A raised ridge along the fused sutures in the baby’s skull
An unusual head shape
Other problems can happen, depending on which of the sutures grow together. For example, a fused coronal suture may cause a baby's face to appear slightly twisted.
If your child’s doctors suspect craniosynostosis, a series of tests may be recommended to diagnose the condition and determine the severity. But our team will be with you every step of the way to provide guidance and answer any questions.
If it is determined that your child is experiencing pressure on the brain as a result of this condition, surgery will be required as soon as possible. While we know this sounds scary for any new parent, please know that your child will be in the compassionate, experienced hands of our specialized surgeons.
Symptoms of increased intracranial pressure include the following:
A bulging fontanelle (soft spot)
Bulging eyes or inability to look upward
Developmental delay
Lethargy
Noticeable scalp veins
Poor feeding
Seizures
Visual impairment
Vomiting
Craniosynostosis Diagnosis
Diagnosis of craniosynostosis most often occurs either at birth or a few months after birth but can also sometimes be detected via prenatal imaging. If this condition is discovered during a prenatal screening, our care team is available to meet with parents prior to their child's birth to discuss options and care treatments available for when their baby arrives.
Craniosynostosis Treatment
The primary goal of surgery for craniosynostosis (cranial vault reconstruction) is to re-shape your baby’s skull in order to relieve the pressure on the brain and allow for adequate brain growth and development. This surgery will also help create a more normal head shape. Most children require only one surgical procedure. However, in some cases, multiple procedures may be necessary.
Both a pediatric plastic surgeon and neurosurgeon will be involved in your child’s care. Their combined expertise helps give your child the best results. After surgery, the only visible scar will be in your child’s hairline, which is usually covered nicely as the hair grows and your child gets older.
Our dedicated Cleft and Craniofacial Nurse Care Coordinator will guide you through each step of your child’s treatment, including surgery.
We're here to provide answers to questions you may have when your child receives a diagnosis for craniosynostosis.
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Q:Question:Is craniosynostosis considered cosmetic?
A:Answer:
Treatment of craniosynostosis is not considered cosmetic and is focused on relieving any pressure on the growth of a child's brain due to the premature fusion of the skull sutures.
Q:Question:Does my child need surgery?
A:Answer:
If your child has been diagnosed with a fused suture, you should strongly consider surgery. Craniosynostosis is a progressive deformity. As your child’s brain grows, the skull will need to expand. If your child has a synostosis, this can prevent proper expansion of the skull. Left untreated, it can lead to future complications for your child.
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From the very first consultation, the surgeons were phenomenal and continued to be throughout the entire process. They always checked in routinely during our nearly six months wait for the surgery. We cannot thank them enough as well as Tiffani and Elaina. They were on top of everything. - Mom
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Extraordinary Outcomes for Our Extraordinary Patients
We know that having your child go through surgery is the last thing a parent wants. But our incredible team of surgeons and specialists provides expert care so your child can have the most amazing outcomes after their surgery. In many cases, children have minimal to no scarring, and all that can be seen is their beautiful expressions.
Your baby will receive comprehensive, compassionate, customized care from our multidisciplinary team of expert providers. Each has the highest level of certification and training in their respective fields. Your baby’s specific care team may include any of the following:
Anesthesiologists
Complex Care Pediatricians
Genetic Specialists
Neuropsychologists
Neurosurgeons
Ophthalmologists
Personalized Care Coordinators
Plastic and Reconstructive Surgeons
Physician Assistants
Radiologists
Registered Dietitians
Social Workers
Understanding Positional Plagiocephaly
Positional plagiocephaly is a condition where your baby has a flat, misshapen or asymmetrical appearance to their head due to repeated pressure on one part of the skull. It is a relatively common condition, affecting nearly half of all infants to some degree. There are various treatment options available and our care team can provide parents guidance on what is the best pathway for their child.
Plagiocephaly can be caused by a number of things, including the following:
Positional plagiocephaly — when a baby spends too much time lying in the same position on one side of the head, adding pressure to the same area of their skull
Torticollis — a relatively rare condition in which a baby’s neck muscles contract, causing the head to twist to one side and tilt at an unusual angle
Plagiocephaly is typically diagnosed during infancy and can develop over the first six month of life. This condition is something that would initially be noticed by a baby's pediatrician during routine exams or even by parents who may notice any concerning areas regarding their baby's head shape. Although initial discussions regarding this condition can happen with a pediatrician, a referral to a craniofacial specialist will be required to properly have a true diagnosis.
Our craniofacial team would first need to rule out any other possible conditions such as craniosynostosis prior to recommending the best plan for treatment.
Our team at AdventHealth for Children works closely with you and your child's pediatrician to develop a treatment plan that corrects your baby's head shape. The may include any of the following:
Physical therapy such as tummy time to help strengthen your child's neck muscles and allow them to move their head more during sleep
Varying sleep positions to ensure a child is not putting pressure only on one specific part of their head
Wearing corrective headbands or cranial helmets
To ensure a seamless patient experience, our care team works closely with local cranial helmet organizations and providers and consistently connecting with them on a patient's progress and development.
Frequently Asked Questions about Plagiocephaly
If you have concerns about your baby's head shape, we are here to help you navigate your options for treatment and provide you guidance with any questions you may have.
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Q:Question:Does my child need treatment for their plagiocephaly?
A:Answer:
If your child is less than four months old and seems to be developing a flattening or asymmetry on their head, your doctor may recommend repositioning or physical therapy. If these conservative treatments do not correct the condition, you may be referred to a craniofacial provider for evaluation. A craniofacial surgeon or pediatric neurosurgeon can rule out any underlying conditions and discuss all possible treatment options, including use of a cranial orthosis – cranial band or helmet.
Q:Question:Does my baby need a cranial band?
A:Answer:
If your child is 5-6 months or older and repositioning has not made significant improvement to the shape of your baby's head, it may be time to consider orthotic treatment. A cranial band or helmet helps your baby’s skull to grow to the intended shape.
Q:Question:Does insurance cover cranial band treatment?
A:Answer:
Insurance typically covers cranial helmet molding once a craniofacial provider has evaluated your baby to confirm plagiocephaly, ruled out craniosynostosis and written a prescription for cranial helmet molding. Insurance co-pays may apply.
Q:Question:How long will my baby need a cranial band/helmet?
A:Answer:
Cranial helmet molding for plagiocephaly is typically recommended at 6 months of age after other recommended measures have failed to correct your baby’s head shape. Cranial helmet molding can be effective until approximately 12 months of age.
Why Choose Us
At AdventHealth for Children, our team of plastic and reconstructive surgeons care for your child’s and family’s body, mind and spirit with comprehensive, compassionate care.
Our team is here to help heal your child’s body, mind and spirit. We’ll work with specialists across medical fields to ensure your little one gets the care, attention and therapy they deserve to live well, be happy and thrive.
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