Craniosynostosis Support/chat

OK so i decided to make this thread into a kinda support/information thread for anyone who has a baby going through Cranio.

Please feel free to add your story and any pics etc  

My little man has recently been diagnosed with metopic synostosis



The skull of an infant is made up of free-floating bones separated by fibres called sutures. This arrangement allows the infant's head to pass through the birth canal and also enables the skull to grow with the brain in early infancy. When a baby is born it has nearly 40 percent of his or her adult brain volume and this increases to 80 percent by three years of age. The baby's skull is also 40 percent of its adult size and by seven years this increases to 90 percent. Rapid growth occurs in the first three years.
Craniosynostosis:
Craniosynostosis is a medical word that means that one or more of the sutures of an infant's head have closed early (synostosis is the union of two or more bones to form a single bone). The sutures are the spaces between the bones that make up the skull. These sutures have each been given a name. See the picture below. Each of the skull bones also has a name and the fontanelles which are labelled on the diagram are known commonly as 'soft spots'.

As an infant's brain grows the sutures allow the skull to expand and give room for the brain to grow. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape.
The cause of this premature fusion is unknown. Craniosynostosis is commonly present at birth but is not always noticeable, especially when mild. It often becomes more noticeable in the first few months of life. It can cause facial and cranial abnormalities and cause increased pressure on the growing brain which can have adverse effects on the child's development. A small minority of children present late. These children have mild deformity that is unnoticed in the first few months and years of life, and they present when aged 4-8 years with symptoms of raised intracranial pressure. The overall incidence of craniosynostosis is estimated as 1 case in 2000 live births.
There are many types of craniosynostosis. They are based on which suture or sutures are fused. The main types are described below:

Trigonocephaly - Early fusion of the metopic suture (from the Greek word trigonos, meaning triangular)
In trigonocephaly (also known as metopic synostosis) the metopic suture is fused. The metopic suture begins at the nose and continues up the forehead where it meets the sagittal suture. This results in a narrow, triangular shaped forehead. There is usually a ridge down the forehead that can be seen or felt and the eyebrows may appear "pinched" on either side. The eyes may also appear close together.
Surgery involves releasing the suture and expanding and rounding out the upper face, forehead and skull.

We have seen the craniofacial team and they reviewing him on the 9th of october with the probability of surgery in december

Poor lil guy! How scary this must be for you guys.

Quoting sunkissed☼HTM:“ Poor lil guy! How scary this must be for you guys.”

Thanks, yeah its scary and i get pretty mad because he has already been through enough being a preemie.

Hes a little fighter though

I am so sorry for you. A lady in my playgroups son also has this.

My three year old Mackenzie had saggital craniosynostosis when she was born. They found out nearly right away and she had a full craiectomy at 10 weeks old. They caught it early enough to avoid the ear to ear cut, which is done after either 3 or6 months of age. She had several 3" long incisions. She did not have to wear the helmet after surgery because she was immobile and her head could shape by laying her on her sides and back. It was horrible but now she is a normal happy 3 year old! Her hair covers her scars. The hospital stay was long and hard. Her eyes swelled shut and her face was black and blue. Goodluck mama  

awwhh huni this breaks my heart   ill pray pray pray for Midget tho!

throwing in some pics of his head, you can see the triangular shape to his forehead

Quoting .Lisa. ♥ [ebfb.hm]:“ throwing in some pics of his head, you can see the triangular shape to his forehead ”

Our daughter Harlow is set to get xrays to see if she has this   My oldest did and had surgery ugh......................im terrified  

your son is precious

Quoting MommytoKenz,Lily,&Harlow:“ Our daughter Harlow is set to get xrays to see if she has this   My oldest did and had surgery ugh......................im terrified   your son is precious”

Aww honey im so sorry  

Are they thinking metopic?

Quoting .Lisa. ♥ [ebfb.hm]:“ Aww honey im so sorry   Are they thinking metopic?”

yes. her forehead has those two indents on each side and her skull isnt smooth it is ridgy   I dont want to do it again. i hope its nothing


when is your lo"s surgery?

Quoting MommytoKenz,Lily,&Harlow:“ yes. her forehead has those two indents on each side and her skull isnt smooth it is ridgy   I dont want to do it again. i hope its nothing when is your lo"s surgery?”

Does she have the midline ridge?
Im so sorry honey   Im scared for you but ill be crossing my fingers and toes that she is fine.
I still dont know why they insist on using x-ray when its useless half the time.

We have out appointment on friday to find out if they will operate or not. I feel physically ill just thinking about it

Quoting .Lisa. ♥ [ebfb.hm]:“ Does she have the midline ridge? Im so sorry honey   Im scared for you but ill be crossing my fingers ... [snip!] ... time. We have out appointment on friday to find out if they will operate or not. I feel physically ill just thinking about it”

I tried to tell them just to do a cat scan, but Nooooo we have to do xray first for insurance issues. Ugh. She does have a ridge but its ear to ear, with a small split where her soft spot is. my oldest daughter had a ridge but it was front to back o her skull and she had saggital cranio   I am a nervous wreck I feel sick

Good luck Friday! Let me know what they say!

Quoting MommytoKenz,Lily,&Harlow:“ I tried to tell them just to do a cat scan, but Nooooo we have to do xray first for insurance issues. ... [snip!] ... o her skull and she had saggital cranio   I am a nervous wreck I feel sick Good luck Friday! Let me know what they say!”

I will =] i will update this thread for you.

Keep me updates on Harlow too ill be thinking of you

Hey, my son just had a ct scan and they told us the back left and the top left were fused together? weve never dealt with this b4, and dont know many details about it.. so any input yall have will be greatly appreciated! Were waiting for an appointment at arkansas childrens hospital so we can go talk to the neurosurgeon...

Quoting mrs_sid31517:“ Hey, my son just had a ct scan and they told us the back left and the top left were fused together? weve ... [snip!] ... be greatly appreciated! Were waiting for an appointment at arkansas childrens hospital so we can go talk to the neurosurgeon...”

Hey hun, welcome to the world of Cranio, im sorry about your baby but im always available if you want to talk (( huggs ))
I highly suggest you come and check out this site, its full of information and a tonne of support and is full of mothers and babies going through the same thing

http://www.craniokids.org/