Welcome to the Sagittal Synostosis Homepage! Sagittal synostosis (also known as scaphocephaly, dolicocephaly, sagittal craniostenosis, or sagittal craniosynostosis), is a condition in infants where the sagittal suture (the ‘soft spot’ or fontanelle on top of the head between the left and right sides of the skull) closes early and inhibits growth of the head in the side to side direction. This forces the head to grow in a front to back direction, leading to a narrow elongated head.
There are over 100 links "buried" in our site. We've put the top ones all in 1 place for your convenience.Click Here! Dig deep and learn more about this condition, surgical options, and the future.
Recent genetics research estimates that sagittal synostosis appears in 1 in 4000 to 1 in 8500 live births, with a 2 - 6% chance of being hereditary. In other words, there is only a 1 in 133,333 to 1 in 850,000 chance of having two children with this rare condition. Well, our two children each have it.
Our son, Benjamin (born: May 1994), underwent surgery (craniotomy or craniectomy) at Toronto’s Hospital for Sick Children when he was five months old. The procedure involved removing a 1.5 x 8 inch (4 x 24 cm) strip of bone from the top of his skull, in effect creating space for the bone to grow in properly. We are pleased to report that the operation went well. Now over five years later, Benjamin is a happy, ‘normal-looking’ (in fact very handsome!) big brother.
Our daughter, Shauna, was born in July, 1997. Although the doctors and literature available in 1994 advised us that sagittal synostosis is not genetic, we now believe otherwise. At one week of age, Shauna was also diagnosed with sagittal synostosis. She ended up having the surgery in November, 1997, when she was 15 weeks old.
In June, 2002, we had a third child, Melanie. She is almost 2 years old and has shown no signs whatsoever of sagittal synostosis. She has a perfectly round head and has passed all her developmental milestones.
It has been almost 10 years since our first child was diagnosed with sagittal sysnostosis and 7 years since our daughter had the surgery. Our 3 children are all happy and healthy. The issue never seems to come up because all our children "look normal". We are truly grateful to to doctors and staff at the Toronto Hospital for Sick Children, who performed the surgery on our children and have enabled them to lead happy, healthy, and normal lives.
If you have found this website, it is probably because you are concerned about somebody you know who may have sagittal synostosis (or a related problem). We have put together this web page so that, as parents and other care-givers, you will know that you are not alone and that help and information are out there.
We have found the links contained herein very informative and we encourage you to access them for more information. If you have found other interesting websites, please advise us and we will add them to our list so that others may benefit.
The Sagittal Synostosis Homepage was put up in August, 1997, while we were researching the condition for our daughter (at the time of our son's birth, the Internet did not exist as we now know it). Since then, there has been tons of information available. We have been contacted by parents from every continent in the world (and we reply to everyone). Send us an e-mail and we'll provide you with our phone number. Since the original 1 page website was launched, we have grown it significantly, attempting to capture the concerns of the (now hundreds) of parents we have spoken with over the years.
We know these are trying times; but remember: you are not alone.