Craniosynostosis

Cranio – aka craniosynostosis, is when a baby’s skull fuses prematurely.  The physical result of cranio is a misshapen head.  The more serious complication of cranio is that the growing brain may not have the space it needs to grow.  It is very rare that cranio can go left untreated.  Without adequate space for the brain to grow and develop there are serious medical issues, including death that can occur.

The basic types of cranio are:

  • Metopic synostosis – a fused suture (joint between two skull bones) in the front of the head, resulting in a pointed forehead
  • Sagittal synostosis – a fused suture on top of the head from front to back, resulting in an elongated head, the most common type of synostosis
  • Coronal synostosis – a fused suture on either or both sides of the head, near the front, resulting in an elevated and flattened eye socket
  • Lambdoid synostosis – a fused suture on either or both sides of the head, near the rear, resulting in a misshapen back of the head

 

There are two types of surgery used to treat craniosynostosis, endoscopic and cranial vault reconstruction.  Endoscopic surgery is less invasive and is typically used on younger infants.  Cranial vault reconstruction (CVR) is more invasive and involves creating an incision along the outside of the head, reaching from ear to ear, and physically separating the skull.

 

 

 

http://www.kumed.com/plastic-surgery/all-services/surgical/Reconstructive/cranial-vault

33 thoughts on “Craniosynostosis

  1. I recently read your post on a friend’s FB re-post. My daughter was born with craniosynostosis (4 of 6 fonatels sealed before birth) in 1991. Ours was a pretty horrible birthing experience, b/c of three days of induction via pitocin in a military hospital after she was 2+ weeks overdue and I’d been laying on my left side for a week with 2-3 weeks of toxemia bringing that on. After she was born were both exhausted and dealing with the aftereffects of all the pitocin. At 6 weeks, when we finally went to our first neurologist appointment, they fully explained (remember, this was 22+ years ago) what was going on and wanted to do surgery so my daughter wouldn’t have a “funny looking head”, the doctor said she would never be able to have a short hair cut, b/c everyone would notice the bumps on both sides of her head. Before leaving the office that day I said NO surgery, we’d been through enough! Ove the years, we’ve had our share of struggles. She has had many other health issues, some clearly related, some who knows? I feel like I tried everything I could to give her the best. Today, she is a strong, independent, beautiful young woman. I am extremely proud of her!
    Thanks for your heartwarming blog, devoted to your son’s growth and development and for sharing info with others. Back in 1991 we were pretty isolated, and there was no social media. I admire your strength and I know Jameson will thrive with all of your love and support!

      1. Our beautiful baby boy was born May 5th, 2014 was also diagnosed with craniosynostosis and is syndromic, he has meunke syndrome. He will be having surgery next month. Did your son have surgery? I’m terrified for him. Nobody understands what it’s like emotionally to have a baby that’s not “normal” I hope you guys have support. Thanks for sharing your journey

      2. To Laura Greiss – my baby brother was born in 1981 with craniosynostosis. My mother used to say that it was the scariest day of her life when she handed him over to the surgeon. They explained how his head would grow long, but not wide without the surgery. She had his pictures taken before surgery because she was so scared (remember this was before digital pics – so we had official “baby pictures”). BUT – he did fine. He recovered. Not only that, but he is a genius. Off the charts IQ. My mom thinks it’s because they made more room for his brain to grow:) Who knows. But this was over 30 years ago and it was the right decision. I hope this helps.

  2. What a beautiful boy!
    I have a daughter born with bicoronal synostosis. She has been genetically diagnosed with Muenke’s syndrome. She’s 11 now and has had two surgeries. She has a very mild manifestation of it and only has a slightly different look… And we were so blessed that she has none of the other physical issues that typically go with Muenke’s like webbed fingers/toes and the underdeveloped midface. She has does have larger eyes and they are a set a little farther apart. She is beautiful, energetic, tough and fun… And I forget there’s anything different about her most of the time! First impressions are always so based on physical appearance. How important it is to get to know people so we can see them as a personality and a soul rather than just a “different-looking” face. Your son is so precious. 🙂

  3. Thank you for this post. I realize it is for your benefit, but it also helped me to understand C better. I have a classmate with a child who had this. I never knew what it was and frankly, didn’t feel like I should ask. He is just a boy trying to grow up.

  4. I just want to say he is freaking ADORABLE!!! ♡.♡ I saw this on Facebook and just fell in love with the little angel! Much love ‘yall!

  5. Jameson is beautiful. There is a Greek saying, the person who is beautiful on the outside when they are beautiful within. Jameson’s face shows kindness and sweetness.
    Anytime my son points out a person who looks different, such as the man with a mechanical leg from the warm we have gone up and talked to the person. It is awkward at first, but most people are willing to talk to us. We eventually learn that we have much in common, there are things we all like. Take care,

  6. Thank you for educating us all and for sharing your story. I came to your site via a link on Facebook/HuffPo and couldn’t stop reading about Jameson. The photo of him with the smushed smores on his face makes me melt. He is just like any other little boy.

  7. Hi! My sister-in-law, Bethany, and my brother, Jameson, have a beautiful little girl named Aberdeen. She’s a little rockstar with craniosynostosis, and so I was super excited to see your blog:) You can see her over at http://dearaberdeen.blogspot.com

    Thank you for writing about Jameson!!

  8. Hola! FIrst of all, Jameson is SO SO stinkin’ adorable :). I wanted to share that my youngest sister was born in 1998 and was diagnosed with craniosynostosis a few of weeks after she was born; my parents did notice she had a bit of a cone-shaped head but her pediatrician was more concerned that her brain would not have sufficient room to grow. She had surger at three months of age and thank God she has not had any problems. She has a baseball stitching-looking scar and her head is still a bit coney-shaped but you can’t tell under her gorgeously long hair. Please give Jameson a hug!

  9. I too wanted to tell you that you are very courageous for sharing . I wish your son all the best in the yrs to come , I grew up with a friend who i am not sure if that was her condition , but i remember her having surgery , and then more as an adult to align her eyes to quote .”look more normal” she was a wonderful friend , very caring and understanding , and although yes she did look different from the rest of us, she was someone who i valued very much as she was more genuine then alot of people who are caught up in how they look , not who they are. As a adult she had a son who aslo had a similiar condition so i am not sure if it was a genetic condition. but i then watched her struggle as you have with people staring and making rude comments., but it only strengthed her resolve as a friend and now as mothers that we where . I am glad that you are sharing your story and i hope that families will educate themselves and their children so as not to cause children and people with disabilities any different then what we all deserve which is unconditional love and respect . So i thank you again for being so open and i wish with all my heart that he will continue to thrive and do well with all that he faces in his life to come , and too you i pray that you will continue to find joy is this blessed child you have, all the best Gloria

  10. Thanks for sharing your story…I have a 4 year old daughter who is very social and interactive with other people. I sometimes did not know how to handle the situation when she pointed out differences. Thanks for enlightening us..Have a great journey with your lovely kids, all the best…:))

  11. What a delight to find your blog and read about your family. I love seeing families being open about their struggles, in order to help educate, teach compassion and acceptance, and make connections with others in similar places. Your story initially made me think of CHARGE syndrome, but upon more reading, I realized that there’s a family here in Portland with a little girl, named Poppy Avalon, who has a very similar diagnosis with APERT syndrome. I believe her mother keeps a blog as well, if you Google her name. Best wishes to you and your sweet family. 🙂

  12. What a delight to find your blog and read about your family. I love seeing families being open about their struggles, in order to help educate, teach compassion and acceptance, and make connections with others in similar places. Your story initially made me think of CHARGE syndrome, but upon more reading, I realized that there’s a family here in Portland with a little girl, named Poppy Avalon, who has a very similar diagnosis with APERT syndrome. I believe her mother keeps a blog as well, if you Google her name. Best wishes to you and your sweet family. 🙂

  13. I came to your blog through a Facebook post, and knew I had to leave a comment. I was born with craniosynostosis 25 years ago, and had surgery at 6 months. Whilst I do still have a misshapen head, and a long scar (although I think they have changed (modernised!) surgery methods since to reduce scarring), I have had a normal happy life, with no IQ impairment (currently studying for a PhD!). I wish you all the best for you and your son, he is adorable.

  14. I am eighteen I was born with craniosyntosis. My journey with craniosyntosis was much different than most other people. I have had to hav four surgeries in my life time once when I was eight months then again at six again at ten and my last one was when I was twelve. None of my surgeries were to change the way I looked but to stop the pain. Most children couldn’t tell when their was pressure but I could and I would have constant headaches most of the time consisting of me closing myself in a dark room with a cold towel over my head because medicine didn’t help my head aches the only thing that helped was having surgery. When I was about two weeks old the doctors told my mom I would be blind and deaf and if by some miracle I wasn’t I would have learning disabilities but after my first surgery I started to follow things with my eyes and for some reason I can hear I have really good grades with no known learning disabilities and the reason I am saying all this is because parents need to be educated that this surgery is not primarily cosmetic it can also save life’s and it is important to remember the medical side of things as well.

    1. Ashley, you are right! Both of Jameson’s surgeries have been to relieve pressure found from taking MRI’s. His second MRI actually showed a chiari was developing from the pressure. Glad to hear you are doing so well now. It’s so wonderful to hear you proved your doctors wrong! 😊

  15. My daughter Anna was born in 1974 and she was diagnosed with crouzons syndrome at 5 yrs old. We knew it would be a long road before she would have reconstructive surgery. Usually if not always the skull is fused. Hers wasn’t. She had braces to get as much extra growth in upper mouth and continued till second year of college. Her surgery was a big success, she went from looking very closely to what Jameson looks like to being absolutely beautiful. Years later,she was 16 at the time of surgery, she had genetic counseling at U of M where her surgery was done and was told her syndrome was actually called Saethre Chotzen syndrome. Her cousin and her son have both been diagnosed with the same syndrome and are not as severe as she was even though she was said to be a mild case. There is hope for Jameson and remember All things are possible with God.

  16. I found your story on Attn.com, through my Facebook feed. I know my story is one of thousands, if not millions, but I want to share it with you and your family. I have craniosynostosis. My mother had it. Her aunt had it. And who knows how many other people in my family had it before that. We never knew what it was until I was about 15 and my family doctor sent me to a specialist. I grew up wondering why I looked the way I do and the only answer my mother could give me was “because God made you this way.” That wasn’t enough to stifle my insecurities as a child and I was always very self-conscious about it. I still am at times, but at 26, I’m finally beginning to come to terms with the way I look. When I went to the specialist she explained what it was, that it is genetic and more often passed on through females, and that my only option was a painful surgery to cut into my skull and reshape it — or live with it. I’m choosing to live with it. People don’t realize how hurtful the things they say and do can be, even when they don’t mean for them to be. (I had a very good friend doing a presentation in high school on bone diseases. She found craniosynostosis online and excitedly asked if she could use me as an example in front of the class. I was mortified.) Even most doctors don’t know about it or, at least, they don’t think about it. I can’t count how many times I’ve been tested for thyroid issues because they were “sure” something was wrong with it even after I explained my condition. Nor do they realize it is a very serious thing — not just that we look “different”. Mine is pinching my optic nerve and slowly putting me blind in one eye. I’ve started to just casually bring it up in conversation and explain it early on in relationships with new friends, co-workers, etc., so I don’t get the curious stares. I think a lot of bullying stems from ignorance and education beforehand is a good way to prevent it.

    I think you’re doing an amazing thing not only for your son but for everyone who deals/has dealt with bullying of any kind. You’re a very strong and courageous woman. It never really gets easy to deal with being different, but acceptance comes with time, I think. Your family is gorgeous. Continue letting your son know how wonderful he is. With someone like you in his corner, he will be just fine. Healthy, Happy and Well wishes to you and yours.

    1. Hi Stephanie,

      Thank you for sharing your story with us. I am curious as to where you live? I read a comment by someone somewhere that said, when we know better we do better. That is what I hope a lot of people take away from this! Best of luck to you <3

  17. My son was born in 2013 with craniosnynastosis his saggital suture was fused. I knew right away he had a ridge in the back of his head and his forehead look bossed to me. I said something to the nurse later that afternoon because I noticed he didn’t have a soft spot. His pediatrician came to visit and reassured me he had a small one. After we came home from the hospital My husband and I just knew his head shape was not normal so I made another appt. with his pediatrician he was 3 weeks old. My Dr. Sent us to have an X-ray done of his head which then showed he had a saggital sutra fused causing this deformation. I was deviated not ever knowing or hearing anything about this I was terrified. I was referred to Dr. Hubli a Cooks Children’s Hospital he is a Craniofacial plastic surgeon but I also did much research and met with other Dr.s and felt Hubli was the best for us. My son at 8 months had total vault reconstruction and is almost 3 years old and the smartest little boy. His head looks perfect and we just had a 2 year check up and the Dr. Said there is nothing to ever worry about again. It was the scariest thing ever to go through it is the unknown and with your child you never want anything to be wrong. I hope we can get more people to share their stories. I always want to help others by sharing mine.

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