EmmaLacey
11-23-2007, 12:05 PM
My daughter Emma was born on May 10th, 2007 with no complications or anything out of the ordinary. When she was about 1 month old we were sent to our local hospital for an Xray because she didn't have a soft spot and there was a ridge on the top of her head. My pediatrician told me that probably what happened was her skull was a little squished during the birth and that the plates of bone were touching or overlapping. She said that over time they would open up on their own. The Xray was just a precaution to make sure nothing else was wrong. She never said the "C" word to me, but I know now that they were looking for it. The XRay came back normal and we pretty much put it behind us. At her 2 month and 4 month checkups the doctor again noted that the soft spot was still missing but she told me that it was probably just slow to open after the birth and because the Xray had come back normal we should just wait.
I was still not worried at this point because my doctor didn't seem to be and I still hadn't heard anyone say Craniosynostosis. Which, even if I had I wouldn't have known what it was because like most people, I had never heard of it. I do think that if I had been given the chance I would have read about it online and maybe figured it out on my own that Emma had this.
Fast forward to the 6 month checkup. We saw a different doctor for this well check visit and when it was all over and she had been given her shots he asked me if I had any questions or concerns. It occured to me to ask him to check her head to make sure all was well with her soft spot. He did and asked me a couple of questions about her Xray that she had months earlier. He told me he was going to talk to her regular doctor and someone would call me. I was a little concerned, but not too worried at this point. The next day her ped. called me and started talking about specialists and Neurosurgeons and Plastic Surgeons and we needed to see someone as soon as possible. I was getting worried at this point. She finally said the "C" word to me and I wrote it down after she spelled it. I made the appointment at Connecticut Children's Medical Center in Hartford for 1 week later and started researching online. Once I found this site and saw pictures of all your little munchkins from the "bird's eye view" I knew that Emma had this condition. Her head is very long and narrow like so many other Sagittal babies, but it never occured to me before that this was something that would require surgery to correct. I just thought she took after her Papa!
Well, the week passed and off we were to CCMC. I was still hoping that she didn't have it and by some miracle they would tell us that she will be okay in a few months and it would fix itself. Well, within 30 seconds of the Craniofacial team entering the room they were taking about surgery. Yes, she had it and yes they could fix it. They assured us that it was completely cosmetic and the condition wouldn't affect her developmentally. I was relieved about that but still very very scared. I started to cry and kiss the top of my baby's head. The nurse, who was really nice and helped us to feel better about the whole thing, was telling us more about the surgery and the swelling and the possibility of a blood transfusion.
Fast forward to today. We have a surgery date of December 13th. We are meeting the Neurosurgeon on December 11th for the first time as he wasn't there the day we say all the doctors. It has been determined that a Plastic Surgeon won't be needed as her forehead won't need reconstruction. I think from what they said that day she will be having the strip surgery and no helmet. I guess I will find out more in detail on December 11th (only two days before surgery) what they will be doing. The Doctor's name is Paul Kanev and he is very booked up. They were going to make us wait to book the surgery at the Dec 11th appointment. they said it wouldn't be until January. We didn't want to wait that long so we were able to get in earlier becuase of her age. Emma will be 7 months old when she has her surgery.
I'm glad to have found this website.
Update: Emma's surgery correction was called the "PI Procedure" with a "squeeze" technique. The PI procedure refers to cuts made in the skull to open it up width ways. The squeeze was what they did to shorten the length a little. This is why she did not need a helmet becuase her new head shape was immediate and now her brain can reshape itself inside the new "box" and continue to grow in all directions.
I was still not worried at this point because my doctor didn't seem to be and I still hadn't heard anyone say Craniosynostosis. Which, even if I had I wouldn't have known what it was because like most people, I had never heard of it. I do think that if I had been given the chance I would have read about it online and maybe figured it out on my own that Emma had this.
Fast forward to the 6 month checkup. We saw a different doctor for this well check visit and when it was all over and she had been given her shots he asked me if I had any questions or concerns. It occured to me to ask him to check her head to make sure all was well with her soft spot. He did and asked me a couple of questions about her Xray that she had months earlier. He told me he was going to talk to her regular doctor and someone would call me. I was a little concerned, but not too worried at this point. The next day her ped. called me and started talking about specialists and Neurosurgeons and Plastic Surgeons and we needed to see someone as soon as possible. I was getting worried at this point. She finally said the "C" word to me and I wrote it down after she spelled it. I made the appointment at Connecticut Children's Medical Center in Hartford for 1 week later and started researching online. Once I found this site and saw pictures of all your little munchkins from the "bird's eye view" I knew that Emma had this condition. Her head is very long and narrow like so many other Sagittal babies, but it never occured to me before that this was something that would require surgery to correct. I just thought she took after her Papa!
Well, the week passed and off we were to CCMC. I was still hoping that she didn't have it and by some miracle they would tell us that she will be okay in a few months and it would fix itself. Well, within 30 seconds of the Craniofacial team entering the room they were taking about surgery. Yes, she had it and yes they could fix it. They assured us that it was completely cosmetic and the condition wouldn't affect her developmentally. I was relieved about that but still very very scared. I started to cry and kiss the top of my baby's head. The nurse, who was really nice and helped us to feel better about the whole thing, was telling us more about the surgery and the swelling and the possibility of a blood transfusion.
Fast forward to today. We have a surgery date of December 13th. We are meeting the Neurosurgeon on December 11th for the first time as he wasn't there the day we say all the doctors. It has been determined that a Plastic Surgeon won't be needed as her forehead won't need reconstruction. I think from what they said that day she will be having the strip surgery and no helmet. I guess I will find out more in detail on December 11th (only two days before surgery) what they will be doing. The Doctor's name is Paul Kanev and he is very booked up. They were going to make us wait to book the surgery at the Dec 11th appointment. they said it wouldn't be until January. We didn't want to wait that long so we were able to get in earlier becuase of her age. Emma will be 7 months old when she has her surgery.
I'm glad to have found this website.
Update: Emma's surgery correction was called the "PI Procedure" with a "squeeze" technique. The PI procedure refers to cuts made in the skull to open it up width ways. The squeeze was what they did to shorten the length a little. This is why she did not need a helmet becuase her new head shape was immediate and now her brain can reshape itself inside the new "box" and continue to grow in all directions.