Spencer’s Story – An Introduction

On August 17^th 2011 at 3:04 in the morning, Spencer Mason came into the world. He was 6 pounds exactly and I would like to say that he was perfect but he just wasn’t. His face was all smushed up. His nose was scrunched up, one eye barely opened and we sort of joked that he looked like he needed to put his thumb in his mouth and blow! But putting all jokes behind I knew deep down that something was just not quite right. I took Spencer for his 3 day check up and asked his pediatrician what he thought. His opinion was that he had seen this before, that it was probably “molding” from the delivery and after time he would just naturally fill out and everything would be fine. He said it could be from the difficult delivery that I had or the way I was carrying him inside and to just wait. I trust my pediatrician whole heartedly so I didn’t bring it up again for awhile. I went to see my OBGYN for my six week check up and casually mentioned to her my concerns about his looks and the fact that when we feel around his right eye socket the bone just doesn’t feel like it’s in the right place. She went on to say that maybe he had a compressed fracture from delivery and suggested we get an x-ray. I went right back to my pediatrician, who said he did not agree but said he would send me for an x-ray if I wanted and this is where our story really begins. What they would find shocked us all. The radiologist who looked at the x-ray felt he may have a prematurely fused suture in his head and recommended being referred to the Cranio-facial Clinic at Sick Kids Hospital in Toronto, Ontario.

On  December 12  (Spencer was 4 months old) we met with a neurosurgeon who sat Spencer on my lap, felt his head for about a minute and confirmed what the radiologist had thought. He was diagnosed with Right Coronal Synostosis or Unilateral Synostosis.

The doctor told us that the coronal suture is the line that runs across the top of the skull, almost from ear to ear. On the side of the skull where the suture has closed, you can feel a raised ridge of bone. When you look at Spencer from above, you can see that his forehead on the affected side is recessed, or further back than the other side (which typically is further forward than normal in order to compensate for the brain's inability to grow on the affected side). In looking straight on his right eye seems bigger than his left and the tip of his nose is slightly deviated toward the side of the fused suture. He went on to explain that most parents say that their child looks worse when they see their child in a mirror. This was entirely true! The only comforting part about this whole ordeal was that we had a diagnosis now, and that it was purely an elective and cosmetic surgery to fix it. He was completely healthy otherwise.  However we were also told that he had a very mild case. We were informed that our next step would be meeting with the Plastic surgeon as they are the ones who are responsible for most of Spencer’s treatment and surgery. As a mother it is extremely scary to hear such things about your child but there is relief in this as well. There was a thousand things running through my mind at this time but I did not have the words or questions to ask so I was left guessing what this all entails.

I started my list of questions and a few days later we received our appointment for plastics which would take place on February 17^th 2011. Spencer would be 6 months old. I researched and researched online before our appointment so that I would really be educated and be able to ask all the questions this time without being caught off guard.  I should mention the day before we our plastics appointment Spencer had his 6 month check up with our regular doctor. His pediatrician was so pleased with how he looked. Spencer’s face was soooo much better. His eyes were almost even; his head had a slight ridge but overall looked and acted like a new baby. He was so smiley, he was rolling and was overall a gorgeous boy now which made all of this even harder. He even got my hopes up and recommended that we bring early pictures and show the progress he has made to the plastics as he believes maybe he won’t actually need surgery. He said he would maybe like to “wait and see what happens as he grows”. This made me incredibly happy. Maybe we weren’t going to have to go through this at all. His head was growing exactly the way it should be according to the plot graph that they use.

So with great anticipation February 17^th came and as nervous as I was I was also relieved that I could finally ask my questions and get the much needed answers I have been waiting for since his diagnosis.  Spencer’s doctor, a Mcdreamy sort of doctor. (If anyone watches Grey’s Anatomy this doctor was Mark in every way!)  He came in the room, put his feet up on the counter and with so much confidence began to tell my husband and I the procedure in which he would fix Spencer. He drew us a diagram of what his head looks like and what it would look like after surgery. I stopped him and then asked if he would look at the pictures we had so carefully chosen and I went on to tell him what my pediatrician said. He could tell that I was very anxious so he was gracious enough to look at all the pictures and information that I brought but then he said what I knew he would say. “He does look a whole lot better but he will not get better without surgery. He will never look entirely symmetrical without the surgery. In all the years of doing this specific surgery, I have never seen anyone get better and in fact he could get worse if we don’t do it.” There is a small window in which to perform this surgery (which is between the ages of 10 – 12 months) and it should be done within that time to get the most success out of it. Now we truly had a decision on our heads. Do we put Spencer through surgery at 10 months old or not?

If the doctors had said to me you NEED to do this surgery or Spencer’s head will not grow properly, or it will impede on his brain than surgery would be an easy decision but it’s not. It is cosmetic. It is so hard for me to decide to put my baby through such serious surgery for looks alone. I started discussing it with everyone who would listen and an overwhelming amount of people said “you need to do this for him” “when he is 16 you don’t want him to say to you why didn’t you fix me when you could have”. The world is a very cruel place and I’d like to believe that looks don’t matter but lets face it they do matter. I kept thinking about the physical scar that he will end up with and how bad it would look and then a very close friend said to me “a physical scar that will be covered with hair, is far far better  than an emotional one that will last a lifetime from the cruelty he may encounter” she was absolutely right! That pretty much sealed it for me. Surgery was the only option and I would have to deal with it for him.