Have you ever had one of those moments in life where something goes wrong and later on you thank your lucky stars it happened because it brought attention to something you would not have otherwise discovered? I had one of those this week. Tricky had a rash. A rash that may just have saved him months of pain and possible disfigurement. The scary thing is, I'm not exaggerating.
Last week when I had gastro the doctors had told me to keep a close eye on Tricky because if the virus landed a grown woman in hospital then imagine what it could do to a little baby with only the beginnings of an immune system. I didn't have to be worried, just alert to any change in his behaviour. He cried a little bit more, wanted to feed more regularly, threw up a bit more and had a low grade temperature - nothing though that was really concerning, he was just a little bit under the weather and was still smiling from ear to ear and talking all day long. Then he got a rash and I didn't know if it was related to the illness or if it was an allergic reaction to the washing powder (Hubby was notorious for reacting to every different type of washing powder as a kid) so we decided to take him to the GP to get it checked out. When we couldn't get in to see the doctor for two days it didn't bother me - it wasn't one of 'those' rashes that they have on the posters at the doctors' offices, you know, the horrible 'Get your kid to the ER now' type rashes.
So we get to the doctor's office (Hubby was off work getting over the last of the gastro I so lovingly shared with him) get asked all sorts of questions and the doctor looks at Tricky's skin and thinks it looks like a combination of a mild eczema and a viral rash. Knowing that Hubby and I had both been sick he checked Tricky for signs of dehydration by feeling his fontanelles (the gaps in the skull bone that allow for compression during birth and for brain growth afterwards). Because it is a little window to the brain, the fontanelle can tell a doctor very quickly if an infant is sick - if it is sunken then the child is dehydrated, if it is bulging then there is excess fluid on the brain. Whichever one you have it's not very good. So which one did Tricky have? Neither. Because the doctor could not find his anterior (front) fontanelle. We were sent for x-rays.
We rang the x-ray place and asked if we needed to make an appointment but I wasn't thinking completely clearly and forgot to mention that it was for an 11 week old baby, so they told us to come on down. On arrival we were told that it would in fact be two weeks before a paediatric radiographer was available to do the scan. Up until now I had been fine (according to the movie The Italian Job, FINE stands for Freaked out, Insecure, Neurotic and Emotional - did they know me when they wrote that?) but being told he would have to wait two weeks was the proverbial straw that broke the camel's back. The tears started. Not Tricky's, mine. The woman serving me came around the counter to comfort me.
She offered me tea. What is it with times of crisis and tea? The shit hits the fan and a cup of tea is meant to make it all better? I didn't want any tea. Was I sure I didn't want any? It would only take a second. There was biscuits too, I could have one of those. Was I really sure, it would be no hassle. She was being so nice, going out of her way to help me and all I wanted to do was tell her where she could shove her tea. I wanted to get out of there. I wanted to run away. Away from the people in the waiting area that were starting to stare, away from the staff who were looking at me with pity in their eyes, away from the gallons of tea to a place where everything would be alright. But instead I choked back my tears, smiled, nodded and listened as she said I could go to the hospital.
The next morning we went to the hospital. In hindsight it was pretty stupid to go on a Saturday - they work on a skeleton staff because apparently kids only injure themselves midweek. But surprisingly we were seen pretty quickly (broken bones tend to come in after 2pm) and after a consult with one of the ER doctors the head paediatrician was called in and x-rays were taken. It was clear. Tricky's anterior fontanelle had closed. Even though I'd had a day to get used to the idea of it being a possibility, when it was actually confirmed my heart sank. Tricky has Craniosynostosis.
So now it is a torturous waiting game. We have been referred to the Craniofacial Surgical team at Princess Margaret Hospital and should have an appointment in the next few weeks for a surgical evaluation because they will have to operate to correct the fault. The doctor may have been using words like surgical consult and correction but all I was hearing was "We are going to slice open your son's scalp and crack his skull."
I'm trying to remain positive in the midst of it all by remembering there are so many things to be grateful for, even in a situation like this. We are so lucky that it has been found early - the earlier it is diagnosed the sooner the corrective surgery can be done. We are so lucky that it appears to have only just closed because it was still there at his six week check up. We are so lucky that he is an otherwise healthy, happy little boy. Left undiagnosed, Tricky's skull would become deformed and the pressure on his brain would cause developmental delays, so this early find, all thanks to a little rash, is fantastic news. Now, where's that cup of tea?
