New to the world and discovery of Craniosynostosis

Well I'm new to this so y'all will just have to bear with me!!


Lucas arrived to this world 21 minutes after is brother Nicholas, and well he needed some help after being born vaginally, breech with is hands above his head!!  He went and visited in the NICU for roughly 4 hours before I finally got to hold him.  I will say now that when I saw him I initially thought "what is wrong with his head"  and then calmed myself knowing that he just had quite a journey, and that this would probably go away!!

Well I was wrong, at his 2 month well baby check, the doctor checked his soft spots and thought that she felt overlapping in his forehead and decided to send off a referral to a pediatrician to see what he thought.  She never thought that it would turn out the way it has.  When he went back for his 4 month check she thought that it felt better.


When Lucas was 4 1/2 months nearly 5 months, we were at the pediatricians office to see him about his head.  Well after a little assessment we got a referral to a neurosurgeon at the hospital for sick children (sick kids) in Toronto.  We made another appt. with the pediatrician and waited for and appt. at sick kids!


At 51/2 months, now the middle of March, we (myself, Lucas, Nicholas and my parents) traveled from northern Ontario, north shore of lake Huron, to southern Ontario, Toronto.  On this 7 hour trip, with 2 5month old children, we get just south of Barrie and what do you know we hit snow, not the nicest to travel in!!  Well we get to the hotel and check in and try to settle in for the night.  Lucas and Nicholas were so fascinated looking out the windows and seeing all the people, in the middle of china town, and the trams and so on it seemed to be the most amazing thing in the world for them, especially since coming from a small town and seeing nothing but trees!!  The boys finally settled.  In the morning we checked out and headed for sick kids and had lunch there!!


Once we got to sick kids and found a parking spot I was amazed as to what the atrium of the hospital looked like, stores and shops and little restaurant kiosks, I wasn't expecting that.  I found it very easy to find my way around where I was going.  We went to see the neurosurgeon and found out that yes Lucas has Metopic Craniosynostosis, as he has a ridge on his forehead and his head is now starting to look like an egg, and that we need to see a plastic/cranio-facial surgeon now too. OK great another trip!!  That is all I was thinking!!

Well we got away from Toronto and on our way home, I got home and researched and researched and while in Toronto I was told that he needs surgery to fix his head and that it is only cosmetic.  Well the nurse in me keeps saying its only cosmetic he don't need it, and then the kid in me, that was teased as a child due to a scar on my face, keeps saying fix it now so he don't have the same ridicule you went through.


We seen the pediatrician again and by that point we have decided that we would most likely be getting this surgery for Lucas.  He seemed satisfied and that when we get a surgical date we need to inform his clinic so he can see Lucas again after the surgery!!


Well in early May we saw the Plastic surgeon, they travelled to sudbury from Toronto, and we informed them that we would like to have the surgery done.  So a week after that appt. I got a phone call saying that the surgery is booked for Sept 14, 2011 and that Lucas needs a CT scan and opthamology appt and anesthetic appt.  All of these have been booked for Aug 4 & 5, 2011 just so we don't have to make very many trips. So this is now a little over a month away for the CT and all those appts then 6 weeks later is his surgery.


I was really struggling with the fact that it is such a major surgery that one day I went in to work, still being on maternity leave, to speak with my boss, just to talk about it, and she said something to me that I think really helped ease my mind.  Being a nurse we see lots of just cosmetic things and one of them is a cleft lip, she then said to me if he had the cleft lip, just the cleft lip, would you get it fixed.  Answer, Yes of course.  Then that is just cosmetic!!  I guess that once I realized that the word cosmetic means that it is being fixed for looks I think the word should be something else.  So Just because its "cosmetic" doesn't mean that it is not needed or necessary!!! 


So one day I was looking online and found one of the best websites out there and I'm so grateful for it because it's the support I have been looking for in all these weeks of "I need someone to talk to who has been through this and knows what I'm about to go through"  It has provided me with information and some friends who have been to sick kids and used the same doctors that Lucas will have, and it has allowed me to see what my baby may look like immediately after surgery!!  Craniokids is great!!