I really want to document the next few months of Collin's surgery so what better place to do it? For those of you who do not know, Collin has been diagnosed with Craniosynostosis (explanation coming soon). Here is the story so far:
Matt took Collin to his 4 month checkup with our Pediatrician. Dr Shepherd spent some time looking at Collin's head and mentioned that he wanted to watch it because it seemed shaped a little funny. Without knowing anything about it, we assumed he was talking strictly cosmetic and maybe would involve a helmet. I pretty much dismissed it all together, thinking as most moms do, my little boy is perfect and doesn't need a helmet to make him look better! At Collin's 6 month appointment, we asked Dr Shepherd about his head and he told us he thought everything was fine but we would continue to watch. Finally at his 9 month appointment, Dr Shepherd spent a lot of time again examining the shape of Collin's head and asking us questions about speech and motor skills (more than usual). He again said he thought everything was fine. The next day he called us to say that he had gotten home the night before and started worrying about Collin and wouldn't feel right until we had some tests run and we saw a pediatric plastic surgeon to rule out any problems. Still at this point we believe this is either a) nothing at all to be concerned about or b) something cosmetic that we weren't really keen on fixing as long as it didn't cause any long term problems.
Fast forward a couple of weeks to Collins CT scan. It was done at Vanderbilt Children's Hospital and he had to be sedated. Luckily there was no IV, he just had to drink a sedative that took about 20 minutes to take effect. Then we got to be with him the entire time he was being scanned. The scan took about 5 minutes and he woke up as soon as it was over. We had to wait about half an hour for observation before they sent us home. The nurses told us when we left that we would hear something from one of the doctors in 24-48 hours. I didn't think we would because we already had an appointment with the plastic surgeon the following week.
The next Wednesday we had an appointment with Dr Kelley, pediatric plastic surgeon at Vanderbilt. I really had no expectations of this appointment, other than at the very worst he would tell us Collin would need a helmet. Even that I thought was a long shot because, again, my baby is perfect the way he is, right? When we got checked into the room to wait for the doctor, we noticed the nurse had left Collin's CT scan up on the screen. We snapped a picture of it because we thought it was kind of cool. Matt told me later that he knew as soon as he saw the scan that something was wrong. I still had no idea at all. Here is the picture we took of the scan. Sorry if this is disturbing...if so, you probably don't want to check back in the coming months because there could be more disturbing pictures after surgery.
So Dr Kelley came in and looked at Collin's head for about a second and then started talking about surgery in 6-8 weeks. We were more than a little in shock, and didn't hear much of what he said after that point. I never even heard him say the name of the surgery or Collin's condition, but I'm sure he did. He rambled off about a million stats and facts and instructions, none of which sunk in at all. I just kept looking at Collin then at Matt and it was a struggle just to keep it together. Finally he told us we would see the scheduling nurse and get everything set up. In a daze, we went back to the waiting room. I called my mom to tell her what was going on, tried to get through it without losing it, and failed miserably. Matt took Collin home and I waited for the scheduling nurse. When I met with her, we set the date for May 3 (we wanted sooner but this was the first available they had). She also showed me some pictures that other families sent in before, during recovery, and after. While it was hard to see some of them, it also really helped me process more of what is about to happen. I left still upset, but much more calm.
So, after some research and emails with the scheduling nurse, we now know that Collin has Metopic Craniosynostosis. Basically the Metopic Suture, the space between the two bones that form Collin's forehead, fused early. It most likely happened before he was born, but there is really no way to know. Nobody really knows why it happens, but some stats say that it happens to 1 out of 250 babies in the US, with 1 out of 4000 needing surgery. If you look back up at the picture of Collin's skull, you can see that the sutures on the sides are still open while the one on the front is completely closed. Dr Kelley explained to us that if we do nothing, the rest of his head will continue to grow as normally and his forehead will remain the size it is now. We can already tell that the front of his head is much more narrow than the back (pic below). Dr Kelley believes that brain growth has not been negatively affected up to this point, but it is only a matter of time before that starts to happen.
I'm not sure of all of the details about the surgery, but I know they will separate the bones and reconstruct his forehead to allow his head and brain to grow normally. The surgery will be performed by a pediatric neurosurgeon and plastic surgeon and will take around 4 hours. He will be in the ICU for up to 3 days and will be sedated most of that time - they will wake him enough to eat but other than that will keep him sedated for pain management and to keep him still. We will be able to stay with him in the room in the ICU (something special for Vandy from what I've seen about other hospitals). From the pictures I've seen, immediately after surgery he will look almost completely normal but will then begin to swell. Most likely his eyes will be swollen shut. After ICU we will be in a regular room for 4 or so more days. Some people I have read about or talked to have said they were able to go home on the 4th day. I believe that depends mostly on when the swelling goes down enough for him to open his eyes. I hope the estimate of 1 week in the hospital is worst-case scenario, but we are prepared for that or longer. Dr Kelley told us that he will need to be home (not in daycare) for 4 weeks after the surgery and will be fragile for up to 12 weeks...not so fragile that he can't walk and play as normal, but we will need to pay closer attention to him to make sure he doesn't fall on his head or run into anything (easier said than done with a 12-14 month old I'm sure!). After the 12 weeks he should be completley back to normal, only a scar on his head which should be covered by hair. He will continue to see the plastic surgeon for 6 years (I believe) for observation but otherwise should be able to live a completely normal life.
One of the things we do remember the doctor telling us is that this surgery is performed at Vanderbilt 2-4 times per week. This was also shocking to me! Now that I know about it and can research online, I see there are so many "Cranio kids" out there and all the stories I've seen have been so positive. I know he is in the best possible hands at Vanderbilt. We are so blessed to live just down the road from one of the greatest children's hospitals in the country. We are also so blessed to have amazing family and friends who have offered help and prayers during this time. I have to remind myself almost daily that while this is big and scary, it could be so much worse in so many ways. As someone pointed out to us...we got bad news, we didn't get tragic news. This is something we can get through and come out on the other side relatively normal.
So now we wait...I don't know if there will be much to post about between now and the surgery. We have a pre-op appointment on April 30 to meet with the neurosurgeon and become acquainted with the hospital. Between now and then we ask for your prayers that everything will go as smoothly as we believe it will and Collin can very quickly go back to being the happy, smiling, energetic toddler he is now.
More to come!
Here is a picture from the top. It is amazing how you never realize something is wrong or different until you're told so by an expert...I just assumed he had a narrow head/face. It will be very strange seeing him with a round head!
(pic by Leila Hunt Photography)
Looking back at pictures from months ago, now I can tell how much smaller his forehead is than the rest of his head. In this one you can see that there is some stretching around his temples...this apparently will no longer be there. I've read that his eye shape may also change, becoming more rounded.
