The Road not Chosen, but here We Are.

craniosynostosis (kray-nee-oh-sin-os-toh-sis). n. premature fusion of the some of the cranial sutures, usually before birth, so that the skull is unable to expand in certain directions to assume its normal shape under the influence of the growing brain.








sam's story

Sam was born a big baby. A really big baby. Our sweet little boy came in at 9lbs 10oz. after a 20+ hour labour on June 12th, 2009. He is awesome in every way. He eats well, sleeps okay, and has the best personality. We are very blessed with our boy.

As the weeks went by after his birth, his head looked longer and bumpier than his older sisters' heads were. I questioned this to various family, public health nurses, and of course the ped. Everyone said, it's fine - he looks great. I had a gut feeling it wasn't, but chalked it up to his instrumental birth (the vacuum was very briefly used), he was so large - even the OB said to me moments after delivering, "You did so good, he was just too big for you", and then there was the fact that he was a boy- boys have bigger heads don't they? I convinced myself that this was all it was, and my mind felt closure with these reasons.

When we went for his checkup with the pediatrician, I certainly was not expecting him to tell me any different than what I had come up with on my own. But the moment he traced and retraced his hands over the ridges on his head, my heart sunk. His hands just felt what I had been feeling for months. I think I even muttered, "it's not right, is it?"

I like the pediatrician, but I find he doesn't like to explain much or that I question anything he says. But, he is very smart - and I trust his wisdom. He decided to monitor Sam for a month to see if anything changes. I asked what happens if there are no changes, and he said very casually, "then we do a little surgery".

It was a long month. I felt his little noggin many times a day, hoping that it would be a little less bumpy. No such luck. Our follow up appointment was on Dec 8th, 2009 and I hadn't observed any difference at all.

Over the course of the month, I researched alot. Almost obsessively - I find education very healing. And knowing everything I did was very therapeutic. Strangely, I met a lady December 6th who told me about a friend she had -whose daughter had gone through the same type of surgery that I had been reading about. Even more strange, she had no idea about Sam. I hadn't even mentioned to her - or many people for that matter. I did end up asking her if I could get in contact with this woman, and she passed along my information.

We had our followup, just Sam and I. It was a crappy appointment. The ped. was running nearly two hours behind and when we finally did get in, he barely said a word to me. He immediately wrote up a form for a CT scan. I asked if there were any improvement, he shook his head no and told me, "It needs to be opened up". Those six little words still make me ill.

The other "cranio" mother did call me later that day, not once but twice. The first call we shared stories. The second call, I realized that she was an angel sent to me. She said, "I didn't think you were up to making phone calls, so I made some for you." She called a pediatric neurosurgeon for me at the Children's Hospital in Calgary. They were the ones who helped her. They specialize in Cranial Facial Reconstruction. And more importantly, they had my name and my son's name sitting on their desk waiting for his CT results.

The CT was 8 days later. Sam had to fast before it for 5 hours. They also were running behind, and he went a total of six hours without eating. This was huge for our giant baby. He was used to eating every hour and a half to two hour intervals. Somehow, he did amazingly. He never even cried until afterwards, when he was waking from being put out. He felt woozy and woke up to strangers and then he cried.

The next day, my GP called with the results. Fusion in the Metopic. Once again, that sick feeling returned. "It needs to be opened up", was said once again. She sent our referral and our scan to Calgary. That was December 17th. We have been waiting since. I can't even describe the feeling that's been inside of me for the past two months. Sadness. And so very scared. I know once we are on the "otherside" it will be ok. IF only we could fastforward over the bad parts.