Craniosynostosis moms: come in
I hope it's OK to ask about this on here.
DS has craniosynostosis (where one of the sutures in his skull fused together too soon), so his head is growing oddly as his brain gets bigger. It's milder than some cases, so that's good. He's having surgery to correct it on November 4, and I'm scared. My little boy (he'll be 5 months that day) is going to have SURGERY. On his HEAD.
They warned us that the risks are minimal (less than half a percent), but by law they have to explain them to us. One of them was him not waking up! We know he's going to have swelling, but it could get to the point where he won't be able to open his eyes for a day or two after the operation -- he's going to be so scared!
I know this is necessary to reduce the danger of brain pressure as he gets older, and this is to give him a better life, but I'm really having trouble coming to grips with the fact that my little lamb is going to be on a big operating table, knocked out, and his head cut open. 
Is there anyone else who's gone through this and can offer any advice/what to expect, etc.?
Re: Craniosynostosis moms: come in
Though different, my daughter had head surgery at 21 months, for bilateral cochlear implants after losing her hearing to meningitis. I know your little guy will have different head surgery, but we did deal with the fear associated with surgery, and the visible bandages, etc from it. Also the whole after care of the surgery sites.
Like our situation, this surgery is to improve your DS's quality of life. I had to learn to have faith in our surgeon. It helped to get to know him well enough that I could develop that trust before surgery day. After you have that faith, you can focus on things that really will help.
I needed to stay very, very distracted during the surgery itself. That was really near impossible, but I brought lots of things to read, made sure I had my laptop, and took lots of walks around the hospital while C was in surgery. Her procedure was 4 hours long. Remember that you will need to take care of yourself during this time, so you are all prepped and ready to be strong when you get to recovery. I made sure I ate and DH went and bought some snacks to have with us for later. We knew neither of us would want to leave C to get food.
Other things I needed to plan ahead for was clothing for LO to accomodate the head bandages. First, they need to be button or snap up and nothing special. C's drainage post surgery was a mess, though normal, and I threw away that 1st shirt she wore post surgery instead of having to deal with it. I could do that because it was super cheap, used and nothing important. Whatever you choose here, be sure it is loose fitting, soft and buttons up. Any neck opening that looks big enough will not be, no matter what. Along this line, also remember clothes for you. I wanted and needed to hold C as soon as she was ok to move off the bed, and that was messy. So worth it, but you will all be looking forward to a shower.
We had a different recovery than you will have, so I don't know what to suggest there, but we have had many nights in the hospital, and the same goes...remember you will need more changes of clothes than your LO.
T and P for you and your family! Hope this helps a bit.
This is a perfect place to ask your question! I remember seeing something else about craniosynotosis in the past couple of months, but don't remember who it was that wrote it. Maybe they'll chime in to. There are also lots of kiddos who've been through other major surgeries, where they probably had a lot of the same feelings.
There's been a lot of discussion as to whether or not DD has craniosynostosis. Some people say yes and some people say no. She has dwarfism and her head is microcephalic regardless of whether your considering proportions or not (there are two different ways to look at microcephaly). Some people say that the skull bones have closed completely, but there are other doctors who insist that they can feel a "finger-tip opening". We at one point had a neurologist tell us that she needed the surgery to have her plates broken apart, but everybody else agreed that wasn't a good idea. And in general we didn't like anything that neurologist had to say so the topic has been dropped right now, and I'm pretty alright with that. She's not growing very much at all, so I think at this point there's not a huge concern of pressure (from this) in the scheme of everything else she has going on.
Part of the reason the other doctors hadn't been keen on the surgery to seperate the plates was because she needs another brain surgery and we're awaiting that on Nov. 8. She's having a lot of stuff done that day, which requires a pediatric brain surgeon and a pediatric spinal surgeon to work as a team. There's a kink in her cord as well as one of her skull plates going into the spinal cord. Vertebrae are fused where they shouldn't be and all sorts of things are not right. Its uber uber scary. And honestly, I don't feel 100% about it. But I've had four opinions--two from amazing world renowned doctors, three were board certified, at least one was double board certified and on the certifying board himself. They all agreed that from a neurosurgical stand point it is the right thing to do for her. My question was whether from a "whole person standpoint" is this the right thing to do since she's gone so long being okay without the repair.
The one thing that I do feel really confident in is the fact that we sought out multiple opinions from the top places. And I know that we chose the right surgeons to do it. The first time we were supposed to have it was in September, but she was very ill so it got post-poned. At that point, I was literally obsessing over it everyday and had these really odd mixed emotions when it was canceled.
Now we're rescheduled and waiting for it in two weeks. This time around, I feel all the fear again, but the hesitation and obsessing are gone. I've realized that I'm not a doctor and this is one of those times that I just have to trust in someone else to tell us what's right and do the right thing--especially when its been four someone else's and they're incredibly smart and respected in their field. One. Day. At. A. Time.
I'm not sure what the details and recovery are like for your little one's surgery. Will he need to be in a cast of some type?
DD will be wearing a halo for at least four months and then move back to the neck brace that we have right now for another month or so. There will be a lot of change to her care after the surgery and we're facing some huge life changes--like the major possibility of a trach and vent machine. There's a huge chance that the paralysis that should be there will happen as the result of the surgery or that she could lose her ability to breathe altogether, because of where in her spinal cord this is all located. She has a history of pneumonia and this all increases her risk for that. Going into Winter. There are also pin sites to be cleaned 3x each a day. And if they aren't cleaned properly, she can get bacterial infections on the pins that are drilled into her skull.
DD is a precious two year old. She's completely deaf and legally blind with a tiny bit of functional vision that comes and goes. Its very very scary and I hate that I can't explain any of this now or for the four + months that she's trapped in the halo afterward.
(Sorry to write a novelette).
Have you gone for your pre-op appt yet?
My friend's baby had it. Inherited. Baby is now in elementary school. Had several surgeries. Did not suffer any brain damage or complications with surgery.
There is nothing to prepare you for the after surgery swelling. Please be prepared, he will not look the same and it may scare you. Also, he will be in pain.. but remember that this is best for him and what he needs right now, so be strong for him and be positive. I think they know when mommy is scared. Don't be scared Mommy! We are pulling for you and DS!
Best Wishes! YOU are giving him that better life!
My son is 2 weeks post op from having a cranial vault surgery. I have to tell you these kids recover remarkably quick! This surgery will be much harder on you! My boy had trigonocephaly due to metopic synostosis. His metopic (forehead) suture closed prematurely resulting in a triangular shaped head.
A dear friend on Parenting after 35 board told me about your sweet baby. I'm so glad she did. Have you checked out www.craniokids.org/support? You are not alone!
I would love to talk with you if you want. I'm quite passionate about craniosynostosis. (More like obsessed! lol)
Please read Robby's blog (below). It's been an incredible journey.
Hugs!!
Kari
Big - 1 year old
Bigger - 6 years old
Biggest - 13 years old