Travel for Craniosynostosis

Craniosynostosis includes the premature fusion of one or more cranial sutures that has a repercussion of an abnormal head shape. Synostosis or Craniosynostosis generally interferes with the normal brain and skull growth. This process happens before the baby’s brain is fully formed. After the child is diagnosed with Craniosynostosis, the child’s brain continues to grow that gives the head a misshapen appearance.

If you happen to travel for the treatment of Craniosynostosis, you would have to carefully plan out your travel expenses and the itinerary. You have to decide for the treatment center and hotels to stay for the treatment of Craniosynostosis. Be sure to take up the appointment in advance for the treatment of Craniosynostosis, so that you do not face any trouble.

If you already know where you will be going for the treatment of Craniosynostosis, or a consultation or a second opinion then click here to plan your travel. Otherwise, click here to get the information about facilities that specialize in Craniosynostosis.

If you cannot afford travel for medical treatment, please consult our directory of charitable organizations that can help arrange no-cost transportation for you.

For more information: (links to the section below)

  • About Craniosynostosis
  • Types of Craniosynostosis
  • Where to go for Craniosynostosis?
  • Causes of Cranniosynostosis
  • Treatment of Craniosynostosis
  • Risks associated with Craniosynostosis
  • Who can go for the treatment?

 About Craniosynostosis

There are seven bones that make up the skull of a newborn baby. The space between every bone is known as sutures. Craniosynostosis is a birth defect that causes the premature joint in the sutures. A newborn baby’s skull is made up of several bones inside the skull that are not yet fused together. Normally, the skull bones are open because the baby’s brain grows rapidly in the first two years of life. The process of the fusion completes normally in the late teens.

As the brain size increases, it usually exerts an amount of pressure on all the bones present in the skull. As the brain grows in size, the brain development does not take as it should due to unavailable space between the skull bones and thus, the misshapen head is the result. The shape of the abnormal head depends upon which of the sutures have fused together.

Types of Craniosynostosis

There are four main types of Craniosynostosis depending upon which suture is affected. Different sutures being affected result in differently shaped head.

  • Sagittal Synostosis- This is the most common kind of Craniosynostosis that accounts for almost half of the reported cases. This type occurs when the suture at the top of the skull fuses together. This in turn leads to lack of growth in width and compensatory increase in length that brings about a narrow, long skull shape.
  • Coronal Cranniosynostosis- This is the second most common kind of defect in Cranniosynostosis category. Every one in four cases reported is of Coronal Cranniosynostosis. In this case, the fusion of one or both the sutures occur that run from top of the ear to the top of the skull. The infant would develop flat forehead, raised eye socket and a crooked nose.
  • Metopic Synostosis- This is a very uncommon type of Cranniosynostosis that occurs hardly in 4-10% of the cases. The fusion that occurs in this kind affects the suture that runs from the nose to the top of the skull. Kids with Metopic Synostosis develop a pointed scalp that is triangular in shape.
  • Lambdoid Synostosis- Lambdoid Synostosis is the rarest of the cases and is seen in just 2-4% of the total reported cases of Cranniosynostosis. In this type, fusion happens in the suture that runs alongside the back of the head. Infants with Lambdoid Synostosis would have a flattened head at the back. Yet, not all the babies with a flattened head at the back have Lambdoid Synostosis. The flatness can be a result of the prolonged position on their backs for longer periods of time. This is known as Positional Plagiocephaly and is quite common in babies.

Where to go for Craniosynostosis?

In USA there are various facilities that can offer treatment for Cranniosynostosis, if you have already determined your child’s symptoms from early stages. As there are more precautions and management rather than the treatment, quite many hospitals cater to the treatment of Cranniosynostosis.

The following health care facilities would help you largely deal with the diagnosis and treatment of the syndrome:

  • Coming Soon

The moment you learn your baby is suffering from a genetic disorder like Cranniosynostosis, you might be going through a lot of emotional turmoil. You might not be able to figure out what to do next or how to take the next step. At this point of time, all you need is to search information and find support. Medical centers with craniofacial specialty teams can present you with the information about the disorder and synchronize your baby’s care among specialists. Additionally, they also help you out to estimate the options of the available treatment.

In a number of cases, your baby’s pediatrician may help you out in detecting Craniosynostosis at a routine baby visit. On the other hand, you would have to make an appointment because of your concern related to your baby’s head growth and travel down for treatment. Your doctor can further refer you to a professional for diagnosis and treatment.

Craniosynostosis is present from the birth but is not always diagnosed when it is mild. In some cases, it is diagnosed as a cranial deformity in the first few months. The diagnosis for Craniosynostosis depends mainly upon physical examination and radiographic studies that comprise of plain radiography and CT. your health care doctor would ensure that the clinical examination would include complications occurring during pregnancy, time period of gestation and birth weight.

Normally, a pediatrician would first do a visual assessment and feel for the ridges in the sutures of the baby’s skull to check if the symptoms are matching up Craniosynostosis. These tests can alone detect Craniosynostosis, but additional tests are also needed to confirm the severity of the problem. Imaging tests like X-Rays and CT scans reveal the fusion of sutures and help the doctors to pin point the treatment for the baby.

If you already know that the cause of Craniosynostosis is hereditary then only a sample of baby’s hair, blood or saliva might be taken up for genetic testing.

Causes of Cranniosynostosis

The abnormal head shape can result due to the following situations before or after birth. This can happen when:

  • A baby slide down into the pelvis
  • If the mother has a misshapen uterus
  • If the fetus is not at the correct position
  • If the mom is having twins or triplets
  • Premature fusion of both Coronal Sutures
  • Premature fusion of Sagittal and both Coronal Sutures
  • Premature fusion of both Coronal and Lambdoid Sutures
  • Genetic syndrome disorder, such as Apert Syndrome
  • Fetal exposure to toxins like phenytoin, valproic acid or other teratogens

Treatment of Craniosynostosis

The first form of treatment that every hospital or doctor offers to do for a case of Craniosynostosis is surgery which is best done in the first year of a baby’s life. The main objective of the surgery is to let the suture and brain grow normally alongside. If surgery is not done on time then Craniosynostosis can worsen and brain deformity would keep on growing.

The surgery involves the presence of a craniofacial surgeon and a neurosurgeon. The role of the craniofacial surgeon is to take care of head, facial and jaw surgery whereas a neurosurgeon ensures the surgery of brain and nervous system. Also, the surgery is performed under general anesthetic so that the infant does not feel any pain. The process can take up several hours and the baby’s face swells after the surgery but this is of no need to worry about.

Mild cases of Craniosynostosis do not need any kind of treatment. On the recommendation of the doctor let your baby wear a specially molded helmet to reshape the baby’s skull. This is effective only when the cranial sutures are open and only the head is misshapen. The helmet helps the baby’s skull to reshape and brain to grow normally. The type and timing of the surgery depends upon the kind of Craniosynostosis and if there’s a basic genetic syndrome.

The motive of surgery is to correct abnormal head shape, decrease or thwart pressure on the brain, create room for the brain to grow normally and develop your baby’s appearance. The process of surgery involves planning and preparation so that everything is carried out smoothly.

Risks associated with Craniosynostosis

If Craniosynostosis is not treated, it can develop further complications. The skull would not grow normally and further distort the working of the brain that can even lead to vision loss. If a child has mild Craniosynostosis, then it cannot be spotted until a child reaches the age of 8 years that leads to Intracranial Pressure (ICP).

The symptoms of ICP are blurry or double vision, low academic quality and constant headache. The symptoms do not inevitably mean that there is intracranial pressure but if these symptoms do transpire then medical attention should be sought. If ICP is not treated then it can lead to further complications such as brain damage, blindness and seizures.

If Craniosynostosis is inherited then it means that the gene is passed on from the parents to child. If only one gene is passed on from the parent then there is a 50% risk for each pregnancy to acquire Craniosynostosis.

Who can go for the treatment?

Basically, Craniosynostosis can be detected at an early age of infancy or at birth itself. The treatment that is fundamental in curing Craniosynostosis is surgery that can happen during the first year after a child is born. Till eight years of age Craniosynostosis is detectable and treatable. If, timely treatment is not given then the problem can worsen and hamper quality of life.

In USA, Craniosynostosis affects 1 in every 2,500 individuals which is equally traceable amongst boys and girls. Every couple has a 3% chance that their child would have a birth defect that needs medical or surgical attention.

Every surgery can help in the remodeling of skull bones that leads to a normal skull shape. Symptoms of Craniosynostosis can be alike other conditions or medical problems, so a consultation with your child’s doctor is required for diagnosis of the problem. If you are not able to find a doctor in your neighborhood that can treat Craniosynostosis, then you have to travel to other State for the treatment.

The most common symptom and much visible one are the misshapen head and face of the baby. Other symptoms are the result of the abnormal brain growth that can be as follows:

  • Missing, full or bulging spot on the newborn baby’s skull
  • Bony ridges along the affected sutures
  • Facial features look distorted such as flattened forehead and brow on one side of the face or a pointed forehead with close-set eyes
  • Visible blood vessels on the scalp
  • Unable to digest food or vomiting
  • Bulging eyes
  • Seizures
  • Headaches
  • Double, blurred or greying out vision
  • Swollen eyes
  • Difficulty in breathing
  • Hearing difficulties
  • Decline in child’s academic abilities