Suzanne
02-09-2007, 02:58 PM
Hello All,
My name is Suzanne and I have 2 kids with craniosynostosis. Our son Sedric had surgery at 15 months of age and will be 3 next month. Monday, we found out the doctors want to do the same surgery for our daughter Serenity (currently 9 1/2 months) when she's about 12 months.
Our condition is syndromic. Yes, I included myself in that statement. Though I was never diagnosed with craniosynostosis, I share the same physical abnormalities as my children. I didn't even know until Sedric was born, and we started seeing a geneticist. (Boy was that a kick to the head!) The geneticist thinks we fit Saethre-Chotzen syndrome, but all testing has been negative thus far. I had a 50/50 chance of passing on the "bad" gene and struck out both times. Even though it was obvious Serenity had this gene, we were hoping she wouldn't have to go through surgery (her attributes look mild like mine).
We've been through it once with Sedric, so we know what to expect. That's the problem... I don't want to diminish the emotional plight of dealing with surgery the first time because I know how heartwrenching it was. But facing it a second time is killing me. I think you're all great wonderful people and I thank my husband for finding your site. Other people just don't understand. Reading some of your posts before and after surgery really brings back the memories.
Can anyone offer some advice as to what to tell/not tell Sedric?? I've considered showing him pictures of his own surgery closer to the date, but I don't want to freak him out, he's only turning 3. I just don't know how much I should try to prepare him.
And how do I stop thinking about "the first time"?
BTW, we're still waiting for the docs to schedule surgery. I called earlier and we might know later today.
My name is Suzanne and I have 2 kids with craniosynostosis. Our son Sedric had surgery at 15 months of age and will be 3 next month. Monday, we found out the doctors want to do the same surgery for our daughter Serenity (currently 9 1/2 months) when she's about 12 months.
Our condition is syndromic. Yes, I included myself in that statement. Though I was never diagnosed with craniosynostosis, I share the same physical abnormalities as my children. I didn't even know until Sedric was born, and we started seeing a geneticist. (Boy was that a kick to the head!) The geneticist thinks we fit Saethre-Chotzen syndrome, but all testing has been negative thus far. I had a 50/50 chance of passing on the "bad" gene and struck out both times. Even though it was obvious Serenity had this gene, we were hoping she wouldn't have to go through surgery (her attributes look mild like mine).
We've been through it once with Sedric, so we know what to expect. That's the problem... I don't want to diminish the emotional plight of dealing with surgery the first time because I know how heartwrenching it was. But facing it a second time is killing me. I think you're all great wonderful people and I thank my husband for finding your site. Other people just don't understand. Reading some of your posts before and after surgery really brings back the memories.
Can anyone offer some advice as to what to tell/not tell Sedric?? I've considered showing him pictures of his own surgery closer to the date, but I don't want to freak him out, he's only turning 3. I just don't know how much I should try to prepare him.
And how do I stop thinking about "the first time"?
BTW, we're still waiting for the docs to schedule surgery. I called earlier and we might know later today.