Your baby’s skull is made
up of five bones held together by fibrous material
Normally, these remain open as
long as the brain is growing.
This allows the
brain room to grow in all directions.
Craniosynostosis, or closure of these sutures, occur
when the bones in your baby’s skull fuse together before
the brain has stopped growing.
This can happen
before your baby is born or in the first few months of
If even one suture closes before it is
suppose to, the brain will grow in the direction of
least resistance, resulting in a misshapen skull or
Some cases of Craniosynostosis can be
attributed to Invetro constraint , or chromosomal
In the majority of
cases of single suture craniosynostosis, it is an
isolated incident and the cause is unknown.
are, however, some syndromes that include craniosynostosis as a common trait.
of cases of cranio that occur as part of a syndrome is
Other possible causes include restraint of head
growth in the womb.
Are The Symptoms of Craniosynostosis?
Most children with Craniosynostosis do not have any
symptoms; the head shape is abnormal, and the face may
be malformed in certain cases.
"I think there is something
wrong with my child’s head, Does he have
Craniosynostosis, and what should I do?"
Mothers have amazing foresight and intuition
which mandy medical professionals don't always give
credit for. If your gut feeling is saying something
isn’t right, discuss this immediately with your
paediatrician, and have a referral to a specialist
who can assist you.
How would Craniosynostosis
The diagnosis would typically come from a Neurologist
/ Plastic Surgeon or Craniofacial Specialist. Normally
diagnosis could be made once CT Scans or MRI’s have been
performed, however could also be diagnosed upon physical
assessment dependent on severity.
Why MRI’s and CT Scans? Why
not a simply an x-ray?
An X-rays will only show if sutures are present, they
will not show the structural clarity needed to see if
the fusion of the sutures has taken place. Only a
specialist surgeon with Craniofacial speciality should
be allowed to diagnose or dismiss craniosynostosis.
If I have another child, will he/she
have craniosynostosis too?
If the cranio
has been diagnosed as an isolated incident (not part of
a syndrome and with no genetic history) then the chances
of another child having it are very slim, approximately
If it was part of either Apert or Crouzon
syndrome, the chances are about 50% that another child
will have Cranio as well.
child was just diagnosed with Craniosynostosis—What do
we do now?
You would be experiencing
normal emotions the likes of Confusion, Upset, Angry,
Sad asking yourself questions like, How did I cause
this, what could I have done to prevent this, you will
more than likely be asking yourself why you were given a
child that has a condition that you know nothing about.
You are not alone.
Understand what the
condition is and proceed to understand how this will
affect your child.
Attain as much education and
options available to you with regards to Craniosynostosis as you can.
aimed to restore the skull and face to a normal shape.
While the deformity may vary in severity, the
psychological effects can cause self-esteem.
child must also be evaluated for any signs of increased
cranial pressure due to restricted skull growth.
The type and timing of surgery varies from child to
child, the diagnosis, and the preference of the surgeon.
At what age is surgery normally
Depending on your surgeon,
some surgeons will suggest in the first 2 weeks
norm is at the age of 3 months of age, but depending on synostosis.
For multiple fusions, surgery of the
remaining sutures is normally done at six months.
Who normally performs the surgery?
Even though there are many surgical options
available, depending on the type of synostosis, the most
common surgical procedure is generally performed by a
plastic surgeon in conjunction with a neurosurgeon.
Why Are Both A Plastic Surgeon And
Neurosurgeon Involved In The Child's Care?
The plastic surgeon reconstructs the facial
deformity and the neurosurgeon is primarily involved
with the cranial deformity.
The combined expertise
of the plastic surgeon and neurosurgeon yields optimal
What do they do in the
It consists of releasing the
fused suture and reshaping the skull.
make an incision or opening from one ear to the other
ear, across the top of the skull behind the hairline so
that afterwards the hair covers the scar.
this incision is made, the neurosurgeon removes the
affected areas of the skull and forehead.
plastic surgeon reshapes these bones and returns them to
a normal position.
Once the procedure is finished,
the incision is closed.
The procedure is extremely
reliable and the risks of complications are low.
Most children go on to lead normal lives with no
residual effects of their Craniosynostosis.
What Are The Risks To The Child In This
Type Of Surgery?
For healthy children
with no other major medical problems, the risks are
The major concern during surgery is blood
loss because an infant's blood volume is low and the
loss of a small amount may require replacement.
How many procedures are normally
Most children who have single
suture involvement require only one surgical procedure.
Those with multiple suture involvement and those
with Craniofacial abnormalities associated with the Craniosynostosis, multiple procedures are necessary.
There are many different types of
surgery, what determines what surgery is necessary?
The type of surgery is determined by the
number of sutures closed and the type of synostosis, the
age of the child and what the surgeon's preference will
Is There Any Scarring From
The Surgery And Will It Be Apparent Later In Life?
The only visible scar is the scar in the
hairline, which is usually covered nicely as the hair
grows and the child ages.
Kind Of Post-Surgical Care Is Needed?
a parent, you will need to keep your child's suture line
This involves removing all crusts with
peroxide and antibiotic ointment and shampooing the
infant's hair with baby shampoo.
Do The Deformities Cause Other Problems
With Ears Or Eyes?
Children with Craniosynostosis, craniofacial syndromes, and positional
deformities may have problems with their eyes and ears.
Those with Craniosynostosis and positional
deformities have trouble with vision as a result of an
imbalance of their ocular muscles.
craniofacial syndromes have problems with their ears and
eyes and often have a history of ear abnormalities in
conjunction with the bulging of the eyes and corneal
My child has been diagnosed
with Craniosynostosis – Now what?
Currently the only treatment option available in
South Africa to assist with Craniosynstosis would be
Surgery. This would depend on severity and would be
confirmed as an option by your specialist.
Mild cases of craniosynostosis are monitored and may
never need surgery. However, Craniosynostosis is a
progressive deformity (which means the awkward head
shape will only get worse as the suture continues to
fuse and the brain continues to grow.)
Surgery on your child is a very scary concept but,
honestly, these children bounce back fast. Some children
only need one initial surgery while other children could
require more. It all depends on the severity of the
suture fusion and how your child grows.
How can you fix a child with
Parents that suspect something wrong with their child's
head shape should consult with a paediatric craniofacial
surgeon and/or paediatric neurosurgeon. The main purpose
for surgery is to open up the skull to allow proper
skull growth as well as to correct the shape of the
skull. As more of our children are affected with
Craniosynostosis research is being done on the impact
fused sutures might have on brain function. Some of our
children might have cognitive delays while others will
grow up with no affects from the synostosis and surgery.
This is a scary time for parents of children with
craniosynostosis. It opens up a whole roller coaster of
Do you feel over whelmed and
It is completely normal to feel this way, you may even
be scared, as you have to now deal with a flood of
emotions, and huge decisions for your child future need
to be made.
Everyone is different so each individual will go through
this process dealing with different emotions, as long as
you know YOU ARE NOT ALONE. Many other parents have been
through this very same Cranio Journey you are about to
embark on, they are there for you to talk to and to
answer your questions, that is why this website was
In addition, we need to be thankful for Social Media,
there are so many useful reference sites and support
groups you can refer to.
Why do I feel Alone?
When a child is born with any health problem it becomes
a highly stressful and scary for the Parents. It may
feel like no one else in the World could possibly relate
to what your family is experiencing. Rest assured that
you are far from alone. There are many Cranio families
How Do I know I am with the
For most families facing this Cranio Journey, your
post-surgery consults and follow ups will lead right
through to adolescence.
You need to ensure the surgeon is the best fit for your
Surgery decisions should not be made on cost options
available, as appeals can be made to Medical Aids and
this is your child’s future. You will find if you ask
opinions many of us have our favourite craniofacial
teams and tend to be biased after years of having them
be part of our families.
LIST OF COMMON WORDS WHEN DEALING WITH CRANIOSYNOSTOSIS
The most common, results in a long and
narrow shaped head with possible bulging prominent
forehead, and sometimes the back side has a “pointy”
knob or “keel” shape.
Fairly common, results in flattening of the
forehead over the affected eye, the opposite eye not
uncommonly looks to be narrowed from the forehead
bulging out and over the eye. The eye can also end up
not on a level line with one eye higher then the other
(called orbital dystopia).
results in a triangular shape to the forehead when
viewed from the top.
Forehead is narrow and there
can be a “pinched” look to the eyebrows and forehead.
The backside of the head is much wider then
The closure of this suture prematurely
does not always mean there is a problem, it depends on
the degree of asymmetry and how severely affected the
results in bulging over the affected suture with
typically the ear on the affected side pulled up and
backwards toward the suture.
Lambdoid gives a
flattening to the backside of the head.
A more common problem in recent years is the
flattening of the back- side of the head not associated
with a true synostosis.
This has become a problem
since the introduction of putting babies on their backs
to prevent Sudden Infant Death Syndrome.
There are a number of craniofacial syndromes that
Some of the most common
include Crouzon, Apert, Pfeiffer, Saethre-Chotzen, and
Each syndrome has problems with
skull growth along with a number of other potential
What would the CT scan look
like if Craniosynostosis is present?
(Skull with no Craniosynostosis)
Unilateral Coronal & Bicoronal Craniosynostosis
(back of the skull shown)
Cloverleaf (kleeblattschadel) Craniosynostosis
Please note this information has
not been provided by a medical professional, and should
not be used in the place of a medical opinion
Cameron Mark Rondi was born on the 10th of March
at Olivedale Hospital. When he was born he was
diagnosed with Craniosynosis, it was picked up
at birth as he was born with facial distortion