James – Sagittal

From day one James’ dad knew there was something not right about the shape of James’ head. The Midwifes, health visitors and myself said it was normal for their head to be a strange shape for the first few days but he didn’t agree and knew something wasn’t right. James happened to be very unsettled one night and I was checking the top of his head looking for his fontanel as it helps you tell if they are dehydrated or not. I started to get a bit worried as I couldn’t find his fontanel. So when the Health visitor came next I mentioned it. She checked James’ head and said “I can just and no more feel his fontanel, check with the doctor at his six week check”. So the next week his check was due and I hadn’t even mentioned it to the doctor yet when she said she was referring us to a pediatrician.

We attended our appointment there at the Victoria Infirmary in Helensburgh. He then referred us onto the Southern General Hospital in Glasgow. Who talked through how James’ two bones at the back of his head have fused together, they spoke us through the option of surgery which we have choose to go ahead with. They have referred us to Alder Hey Children’s Hospital in Liverpool. We went for a consultation there on the 1st March 2011. They spoke us through step by step of the surgery and aftercare. James has to have his forehead turned 180 degrees his side plates moved the top of his skull turned 180 degrees and the back of his head moved. They have made us aware of how he will look a different child so not to panic and of all the wires we will see and any other things that may be there. James currently attends the pediatrician at the Victoria Infirmary every three months to check, growth, development and swelling of the brain. Before James’ operation he would refuse solid foods and wanted to be fed constantly. He was referred to a dietitian who put him on a high energy milk which didn’t make a difference. With his operation coming up we weren’t too worried about trying to get him to eat food as he was still gaining weight.

On Monday the 23rd May 2011 James went down to theatre for his operation. 7 hours and 30 minutes of sheer and utter worry. Getting the kind messages from my cranio friends I’ve found on facebook and while at the hospital was amazing you really don’t realize how much support you need until the day comes. Then getting that phone call to say he was getting brought up to the HD ward was the best feeling in the world. James was 10 months old when he received his operation though we knew from 6 weeks old what was wrong. On Saturday 28th May 2011 we got the second best news of the whole week we were getting to go home as James was doing great.

James still attends four monthly appointments at Victoria Infirmary and they are very pleased with him as at only two months post op he’s now eating solids, walking, clapping his hands and growing really well. He had another appointment at Alder Hey on the 29th July 2011 for a MRI Scan to make sure all is well. His mri scan was great news they were so happy with him they have moved all his check ups to a hospital in Glasgow so nearer home. Thanks so much to all the Cranio websites and families for they’re amazing support.