How does it start?

[Chad]

I have a question. If there is no cranio background in my family how did I get it? I asked my parent's and they said they don't know and the doctors didn't either when I was born. Does anyone know?

[dannlark]

Not sure the Dr.'s even have an aswer to this question. Unless it's a genetic issue, then there is some talk of it being a positional thing in-utero. That would make sense for Ian's as he was head down and VERY low in my pelvis for most of my pregnancy. Cranio is such a strange bird, isn't she?? I'll ask Dr. Fearon his take on it when we see him next week...

[Chad]

Ok thankyou very much.

[three.little.boys]

Chad- the following is from our surgeon's website.....perhaps this will help answer some questions!:

Skull Growth

In order to understand craniosynostosis, it is helpful to know a little bit about the normal growth of the skull. The skull is not made up from one single bone, but instead is made up of different bones. The junctions where these bones meet are called sutures. We know that sutures are very important in growing children. The skull does not usually grow on it’s own; instead, it only gets larger because the brain is growing and putting pressure on the skull to get bigger. So, if the brain does not grow, the skull does not get larger. In the first few years of life, the brain grows very quickly. As the brain grows, it stretches the skull bones apart, with the sutures acting like expansion joints. It is believed that this stretching of the sutures sends a signal to the skull bones telling them to grow bigger so that the skull can accommodate the enlarging brain (actually, the growth of the skull is slightly more complicated that this, and a simplified version is being presented here). If one of these sutures has fused shut, the skull cannot expand to accommodate the growing brain, so the brain must push the other non-fused sutures further apart so there is enough room for the brain. This sequence of events leads to the abnormal skull shape that either parents, or pediatricians first notice.
Fusion of the Suture
What causes sutures to fuse shut before they are supposed to? The two most common causes for premature closure of a suture are either a change in one of the child’s genes, or from outside pressure on the skull. When only one single suture is fused shut, the most common cause is probably “environmental” (or from outside pressure on the skull). We know that it is possible to cause craniosynostosis in animals by restricting skull growth while the animal is still in the womb, and it is very likely that this is the primary cause for the majority of the single sutural synostoses in babies. The uterus, or womb, is a relatively small space. We know that sometimes babies can end up in certain positions in the uterus where they cannot move around freely (for example, the breech position). We suspect that children born with a single sutural synostosis may have been positioned in the uterus so that there is pressure on a part of the skull. If the skull gets caught in a tight place in the uterus, this pressure can restrict the ability of the skull bones to be stretched apart by the growing brain. If the suture is not stretched apart, it “thinks” it’s job is done and it fuses shut with normal bone. Abnormal skull shapes and single sutural synostoses are more commonly seen in twins than in single births, further supporting this theory of in-utero constraint. Craniosynostosis is also more common in boys than girls leading some researchers to speculate that testosterone might make suture closure more likely if there is any restriction of skull growth inside the uterus. Mothers who have delivered babies with single sutural synostosis should not feel guilty that they did anything wrong during their pregnancy to cause this condition. Craniosynostosis occurs in spite of the mother doing everything “right.”
Usually, when children with a single sutural craniosynostosis grow up, they do not pass this trait on to their children. However, it has been reported (and we have seen cases of this, as well) of a single sutural synostosis being passed from generation to generation. This hereditary pattern suggests that the single sutural synostosis is caused by a problem with a gene allowing this trait to be passed from one family member to the next. It is possible to test for some of these genes to see if they are present in children with craniosynostosis (which is something that we are currently doing in Dallas). However, it should be remembered that the overwhelming majority of single sutural synostoses appear to be the product of two parents with normal genes, and a mother who has normal prenatal care. Should children born with a single sutural synostosis decide to have children of their own in adulthood, the chance of passing on the condition is estimated to be less than 2%. If a couple has a child who is born with a single sutural synostosis, the chance of this couple having a another child with a single sutural synostosis is also thought to be about 2%.

[Chad]

That definattly helped me understand most of it. Thank you. I guess even the littlest percent makes a difference.

[three.little.boys]

Glad it helped Chad...

I think there is still a lot that the medical community does not understand about cranio! I think there is still a lot to learn..but it's a start! (by the way...interestingly enough, Quintin, my cranio baby, was firmly lodged against my ribs in a breech position so that his forehead was stuck in my ribs until the 39th week of pregnancy. This is in keeping with the theory that I posted above!)

[Chad]

Oh I see. Thanks again for the info.

[Tawnia]

yes...whereas Azia's is single suture metopic just like Quinton, but she wasn't breech...or lodged anywhere...and you can see the shape of her forehead already starting in 19 week ultrasounds. BUT...her PS says that although research hasn't caught up with theory he doesn't think its a coincidence she has 3 "mid-line" birth defects (cranio, tongue tied and heart defect).

[Chad]

I would have to ask my mom if they told her about any of that stuff like the single suture thing.

[Alison]

wow! that info is really helpful! So would i be classified as a single suture, because im bilateral? even though i had a partial fusion of the lambdoid?

Although doctors have not found any reason to think that mine is genetic, my mum and i both think that it could be. I have 3 full-blood siblings, (L, D,and N), 1 half sister (J) (same dad) and 2 half sisters (same mum) (M, T). OUt of all of us, the only ones who have abnormalities are those who are connected to my dad. J is tounge tied, D had surgery for his tounge being tied and L was born with a hernia (though this could all just be coincidental). Also, if you were to look at my dad's face, you will see some similarities to mine, in the sense that one of his ears is further back, his eyes are odly shaped ect but he has never been diagnosed with cranio. His skull is fine but his face is different. Do you think this could all be related? or just coincidence?

[Chad]

So the odds of an offspring having cranio is less than 2%. That's good because if I ever have a child I would not want him or her to go through the same thing I did.

[AllyCat]

Rohan was in one place in my pelvis the entire pregnancy. He pushed so hard on the right side of my body that I had sciatica that dropped me to the floor for days at a time. I could hardly walk. One day, I felt more movement on the right side and being an OB nurse, one of the residents offered to do an ultrasound (we were slow that night and she wanted practice). He had moved his back to the left side, but it seemed like his head was still turned the other way. He kicked like mad for a day and then went back to the original location (back to the right).

Doubt this means anything, but he did have a nuchal cord (cord around his neck once). It was a long cord so we never heard any heartrate drops that concerned us. About 20% of babies are born with the cord around a neck, foot, shoulder, hand, or body. It really doesn't cause any problems most of the time.

We are not planning to have more kids, but were told that our chances of another child with cranio were the same as for anyone else who had never had kids with cranio.

[Chad]

My mom told me yesterday they couldn't get an accurate measurement of my head when I was in her stomach because I was in a weird position for a while. Could've that caused me to get cranio?

[AllyCat]

It seems that would hold true then for positioning as an "environmental" cause for your cranio, Chad. I don't think anyone really knows...they just know that position and intrauterine pressures might have something to do with it.

My guess is there won't be a lot of research into it either as there is little we can do about fetal position/lie. We get what we get.

[Chad]

Today I went to the docs and they said all the same stuff that you guys told me. They said if I ever plan on ever having kids I should get a genetics test before I make a decision. (When I'm older)

[spoongirl10]

Good question because i asked the neurosurgeon the same thing. There was no history in our family of craniostenosis. Therefore, they don't know. They told me that it could have been how he was positioned in my belly he was a little big (8lbs 9oz)

[Chad]

Yeah they said positioning could have somthing to do with it.