More About Amelia's Condition

Below is a more thorough explanation of Amelia's condition which I copied from a pamphlet on craniosynostosis from the Children's Craniofacial Association website. Most of this is information we've already learned in the past 5 months, but this is just a concise explanation for anyone who wants to know. There is also a detailed explanation of the surgery to inform your prayers for her.

But before we get to the boring medical stuff, here are some pics to enjoy! :)

Here is a picture of Amelia when she was just a few weeks old. You can sort of see the ridge on her forehead.



As she has grown the ridge on her forhead has become less noticeable (probably because we're too busy looking at those beautiful eyes!), but it is still there. It is easier to see the narrowness of her forehead when you look at her head from the top down, but since no one generally takes pictures of their kids from that angle, here are a few other ones instead.

Amelia and Daddy


"At the gym" with her big brother.


Chillin' with her big sis.



What Is Craniosynostosis?

Craniosynostosis is a medical term that literally means fused
bones of the skull. It is a condition that some children are born
with or later develop. The skull is abnormally shaped because of the
fusion of skull bones.

To better understand craniosynostosis,it is helpful to know that our
skulls are not made up of one single “bowl”of bone. Instead,
different bones that fit together like a jigsaw puzzle make up the skull.
The areas where the bones meet one another are called sutures. As a
baby grows, the brain rapidly increases in size. According to current
theories of growth, the growing brain pushing on the bones of the
skull causes the skull bones to expand or grow. Much of this growth
occurs in the areas of the sutures where the bones meet. When one of
the sutures fuse,it is called craniosynostosis. There will be no growth
in this area. This inability to grow in one area may lead to overgrowth
in another area. This results in an abnormally shaped skull.

There are numerous types of craniosynostosis. Different names
are given to the various types of craniosynostosis. The names
depend on which suture or sutures are involved.

(Amelia's condition is called trigonocephaly)

Trigonocephaly is a fusion of the metopic suture. This suture runs
from the top of the head,down the middle of the forehead,toward
the nose. Early closure of this suture may result in a prominent ridge
running down the forehead. Sometimes the forehead looks quite
pointed. It resembles the bow of a boat. Frequently, the eyes are
closer together.


What is the surgical procedure for repairing this condition?

The surgical technique for correcting the problem varies with the
type of craniosynostosis, but all have certain things in common.
Surgery is only considered for these children after a pediatrician,
trained in this field, certifies the child can tolerate the anesthesia
and the operation. One of the greatest risks to the child comes from
the general anesthetic. It is necessary for an anesthesiologist, well
experienced in this type of surgery in young children, to be present
during the entire procedure. The surgery is usually performed by two
specialists working together. One is a craniofacial surgeon and the
other is a pediatric neurosurgeon. The craniofacial surgeon is a
plastic surgeon who has received additional training in pediatric
craniofacial surgery. It is common for an incision to be made in the
hair from one ear to the other ear, across the top of the head. This is
usually the only scar from surgery. The hair usually hides the scar.
After this incision is made, the neurosurgeon removes the affected
areas of the skull and forehead. The craniofacial surgeon reshapes
these bones and returns them to a normal position. Once the
procedure is finished, the incision is closed usually with dissolving
sutures. The child is then taken to the pediatric intensive care unit.
The routine is different among the various centers. Children
typically spend the first night or two in the intensive care unit. They
then go to the regular pediatric floor. Children are normally sent
home on the third to fifth day following surgery. Generally, children
experience only minor discomfort from this operation. There is little
pain from the cutting of skull bone. By the second day after surgery,
most children need nothing more than Tylenol. It is also common for
both eyes to swell shut for about three days after surgery. Not being
able to open one’s eyes annoys the child the most. After the child is
discharged from the hospital, the family may be asked to stay in the
area for another few days before returning home. This allows the
treating doctors to make sure there is a good chance that there will
be no major complications. Between six weeks to three months after
surgery, the child returns for follow-up visits. The surgeon usually
sees the child once a year thereafter.