Megan's Story:

At our 2 month checkup Megan’s pediatrician brought up her head shape. I calmly told her not to worry, she was born that way. (Amusing in retrospect!) 

At 4 months we were sent for x-rays and the radiologist concluded her skull was normal. By 6 months her pediatrician was still concerned and suggested we see a pediatric neurosurgeon. Still certain it was due to birth, or position in-utero, I toted her and her ‘normal’ x-rays down to his office. 

It took him approximately 2 minutes to make a clinical diagnosis- a classic case of Metopic Synostosis. After they resuscitated me (not really) I promptly went back to my denial mode. I said, oh well, it's cosmetic we just won't do it! We went back a couple weeks later for a 3D CT scan. I was not consenting to surgery and the neurosurgeon wanted to make sure we had no underlying brain constraint.

By our next appointment with the neurosurgeon I had done some research and was beginning to be more open to what they had to say. There was still no way I was going submit her to surgery, but at least I wanted to know what I wasn't going to do. A couple weeks later we met the craniofacial surgeon, and by then I had done enough research there was a good chance I was going to consent, although I was still maintaining my sanity by saying I wouldn't.

He was very assumptive we would have the surgery, and a few days after the appt. his office called with a date- June 10. I accepted it, all the time looking for a way out, anything to give me a reason not to do it. I made some fast track plans and scheduled a second opinion. The second opinion was not so much to confirm her condition (she really was a classic case), but to make sure that surgery really was required, and that this was the right surgery. I was hoping to hear him say, "Well, we've found these kids really do grow up to look normal", or something along these lines. Obviously he didn't.

Her surgery was Wednesday June 10 and was performed by a Pediatric Neurosurgeon and Craniofacial Surgeon- along with several assistants. Her surgery consisted of a wavy cut from ear to ear over the top of her head.

(Our surgeons use a wavy cut because they have found a straight cut sometimes causes the hair to part at that location.) They removed her skull from the top forward, reconstructed it in the ‘correct’ shape, and replaced it. She did require ½ unit of blood, which we had direct donated. She was an afternoon surgery. Can you believe they would do 2 of these in a day!

We arrived at the hospital at 10:00. At about 11:30 they gave her a liquid sedative they called "goofy juice". It was supposed to make her sleepy, then I would rock her to sleep and when they took her it wouldn't be traumatic (for her!). Of course, she spit most of the medicine out, but did get enough to make her goofy! I rocked and rocked her, but she wouldn't go to sleep. When the nurse finally took her though she definitely wasn't traumatized. She thought the nurse's red lipstick was the funniest thing she had ever seen!

I don't remember exactly when they took her back, sometime around 12 or 12:30. After I composed myself we went back to the waiting room. They said they would call and let us know when they were getting started with the actual surgery (it takes a while to get them to sleep and all the lines in).

It was about 2:00 when they started the surgery. The neurosurgeon came out about 3:30 or 4:00, she was doing fine. The craniofacial surgeon came out about 5 or 5:30- the surgery was over and she was doing fine. We got to see her about 6:30. It was difficult to see her like that, but by that time we were so elated that it was over and everything was ok that it didn’t bother us as much as we thought it would. We noticed an immediate difference in her head shape. We just kept saying 'she's so round!'. There was a lot of swelling, and although we were prepared for it, I didn't realize that there would be so much fluid she wouldn’t be able to hold her head up.

Because they are working on the front of the skull the facial swelling will be more pronounced than in some of the other synostosis cases. Both her eyes swelled shut. This is probably the hardest part for them because they can't see and don't know why. They provided a lot of pain medication at the hospital, but the frustration of not being able to see they can't help with.

To help we took some familiar soft stuffed animals. Things with the scent from home. Also, some familiar music helps.

Our surgery was on a Wednesday and we came home Sunday afternoon. They were ready to release us Saturday, but I wasn't ready to go! By 2 weeks she was pretty much back to her old self. We had dissolvable stitches, and care of the suture line consisted of washing her hair twice a day. They did not shave any of her hair.

Megan’s recovery proceeded without incident, and today she is a beautiful, happy, well-adjusted child with no recollection of the surgery. As of this writing she is 2½.