Results of my survey from 500+ Cranio Families!

Hello!
 On Thursday August 27th I posted a survey on the Cranio Kids-Craniosynostosis Support Facebook page. I was so excited when I woke up the next morning to see over 250 people had participated. Because so many of you wanted to know the results, I filmed a video and posted it to Youtube. At the time I filmed the video I had around 350 responses, now  I have 503. I have decided to write down my "final results" of this survey in a blog post, as I will no longer be checking it for responses. I would like to apologize for my spelling or grammatical errors in that survey and for any future mistakes. *Please note that I created that survey in 20 minutes, I sat down and my computer and wrote down all the questions I could think of.* I was hoping that it would be able tell me something I didn't know about Craniosynostosis. Some of my findings were to be expected and some I was surprised by.   I have been collecting information and am planning on creating another, more detailed survey. These are my results:

Is your child a boy or girl?
64.2% Boy
35.8% Girl

Was your child delivered through C-Section?
No 59.8%
Yes 40.2 %

What type of Craniosynostosis does your child have?
Sagittal 41.4%
Metopic 27.6%
Right Coronal 7.2%
Bi Coronal 6.6%
Left Coronal 5.1%
Lambdoid 4.0%
UniCoronal 1.5%
Other 6.6% some of which included All sutures closed, Multiple,Seathre-Chotzen, Cranio Cloverleaf, Mercedes Benz, Pansynostosis,Squamosal and frontosphenoidal.

When was your child diagnosed?
2 weeks to 3 months old 30%
Within the first 2 weeks after birth 27%
3 months to 6 months old 20%
6 months to 9 months old 7.5%
9 months to 12 months old 5%
Before birth and 12-18months were both 3%
After 2 years old 2%
18-moths to 2 years old 1.4%

Does either biological parent have Craniosynostosis?
No 90.7%
Yes 5.9%
I am not sure 3.4%

Are there any of members of your child's family that have Craniosynostosis? 
There are no other members of my child's family with craniosynostosis 74%
Another child/sibling 4.9% (25 people who took this survey have more than 1 child with cranio)
A cousin or second cousin 4.3% (22 people)
An aunt of uncle 2.8% (14 people)
A grandparent or great-grandparent 1.6% (8 people)
I am not sure 12% (62 people)

When my child was born the biological mother's age was
25-30 37.8%
31-35 28.5%
19-24 18%
36-40 13.3%
Older than 41 years 1.6%
Younger than 18 .8 %

When my child was born the biological father's age was
25-30 34.8%
31-35 28.9%
19-24 10.4 %
41-45 7.9%
46-50 1.4%
Older than 50 .8%
Younger than 18 .2%

Is your child's cranio associated with a syndrome? Does your child have any of these markers?
None 72%
Tongue tie 4.8%
Sacral Dimple 4.6%
Mongolian spot 2.4 %
Hemangioma 1.9 %
Crouzon Syndrome 1.1 % (6 people)
Apert Syndrome .6% (3 people)
Pfeiffer Sydrome .4 (2 people)
Other 11.9% Some of which included Muenke 7 of you and 2 possible, Saethre-Chotzen 5 of you, Cranio Fronto Nasal Dysplasia, Possible Bohring-Opitz or Baller- Gerald, 22q11.2 deletion syndrome, Pierre Robin Sequence (small chin and cleft palate), deletion of chromosome 12q21, Rare chromosome deletion 15q 15.2-22.2, Chromosome 1 and 3 duplications,unbalanced translocation of chromosome 3 and 6,extra material on her 15th chromosome, Fetal valproate syndrom, chiari, Bear Stevenson syndrome, lip ties.

What type of surgery did your child have or will he or she be having?
CVR 72.3 %
Endoscopic 14.5 %
Other 13.2 % some of which included FOA, Posterior calvarial distraction, Spring assisted, orbital reconstruction and modified pi

Do you think your child's craniosynostosis could have been caused by something? ex: position during pregnancy fertility treatment or a medication taken? Or do you believe there is no reason?

* I left this open ended because I wanted to hear your personal thoughts and I am so glad I did. There are 497 different responses so I am not going to include all of them. Most of you do not think there is a reason or a cause. Of those of you that do here are some of your answers:

Position during pregnancy was a very very common answer other than that, genetic mutation, chromosome deletion, breech baby, forcep or vacuum delivery, medication taken ( paxil, prozac, zoloft, celexa or others not related to anti-depressants), mother with vitamin d deficiency, mother with thyroid problem, fertility treatments and clomid or other medication, environmental causes, family history, hereditary, stress, birthing process, not enough space for baby due to cyst, fibroid or mothers size of uterus,small pelvis, Bi cornuate uterus, tilted uterus, pre-term labor,pubic symphysis disfunction.

Some of these are direct responses from you: 1. husband was taking lyrica and studies reported that it caused skull malformations in rats,2. There is currently a high connection between military parents who participated in OIF and OAF and babies with cranialfacial defects. My husband served in both. We have no other links. 3. The FDA issued a black box warning saying that SSRI's should NOT be taken during pregnancy- with several symptoms similar to the twins- cranio being one. Also cardiovascular issues a obviously intellectual disabilities. 4 Maybe being exposed to heavy cigarette smoke second hand. 5.I did take Citalopram during pregnancy and am aware there's a class action going on about that, 6 our surgeon said be believes being male could contribute because he believes testosterone makes sutures "more sticky" 7.I've always wondered if the pelvic x-rays at 5 weeks pregnant could have caused the cranio. Or possibly my lack of mobility for several months die to the pelvic fractures could have caused positional cranio.

There were also 4 sets of twins mentioned by you guys in the survey. 50% of you only one twin had craniosynostosis, and the other half of you had both twins with cranio.

I hope you found this as interesting as I did, if there are more specific questions you would like to know please leave me a comment or e-mail me at beautyafterbaby@gmail.com and I will try to include them in my next survey.


THANK YOU TO EVERYONE WHO TOOK TIME OUT OF THEIR DAY TO PARTCIPATE!
-Amanda

If you are curious, my daughter has sagittal synostosis and this is a link with updates on her progress Click Here