I was just informed that My 8 months old daughter has metopic craniosyntosis-never heard the term before aka closing of the soft spot too early. Right now we are going through the process of going to see different specialists. I have read up about it and is now calmer than before, however we still need support and feedback from parents who might have been in this situation. thanks
I don't know much about it, but there are some support groups online:
http://www.facebook.com/group.php?gid=5030643596
scroll down on this page and there is a large listing of support groups:
http://www.faces-cranio.org/Disord/Cranio.htm
Good luck, I hope all will turn out okay,and you are all in my heart :)
I am not that familiar with this condition but I did meet one child with this condition and she seemed to be doing well, you could not tell there was any problem when you met and interacted with her (but she was being seen regularly by a neurologist in case problems developed). I was only a case manager for this child for a short while when she was a baby/toddler. I don't know how things play out as a child gets older. I hope things work out for your daughter and family.
Hello,
Craniosynostosis occurs 1 out of 2000 infants and there are plenty dedicated and great specialist near you that will guide you the right way and put you at ease by explaining everything from preparation of surgery to post treatment care. There are two types of surgeries for cranio (open and endoscopic) and you will have to see a pediatric neurosurgeon or craniofacial specialist for them to decide. Montefiore Hospital in the Bronx has a great cranio team (Dr. Staffenberg, Dr. Goodrich and Dr.Abbott)-they have also treated Jorge Posada's (NY Yankee) son when he was diagnosed with cranio as an infant. Other neurosurgeons that perform cranio surgery can be found at Columbia Medical Center in Manhattan and Dr. Rachel Ruotolo of Long Island Plastic Surgical Group (has multiple locations around the boroughs). My facility has helped in the post treatment process for some of the patients of the above mentioned doctors and I personally can say that they take great pride in what they do for their patients and their families.
There is also support for you from other parents who have been in your exact same position. Even though I have never had a child with cranio, I've dealt with a lot of families who have and organizations who support the cause and try to raise awareness for research and early diagnoses. A great websites is: cappskids.org , beyondaglimpse.com , craniokids.org , worldcf.org and jorgeposadafoundation.org.
There is also support on social networks like Facebook, where you will find Amy Galm of CappsKids and Melanie Harper of Beyond A Glimpse. They have an army of parents (lots of mommies and beautiful cranio babies) ready to hold your hand and answer a question at a moment’s notice. I do suggest really talking to them.
I hope this was of help to you and I wish you and your daughter much luck and prayers for your family =)
Our son was diagnosed at his 12 week appointment. He had surgery at 7 months at Children's in Dallas. Our specialists had someone who had the surgery call us and we went and met with them and their son who the surgery. It was great meeting her and seeing him. Our son is now 11 and unless you saw the scars would never know he had the surgery.
