I had known for a couple of months that my baby would be very small, and he was! (born weighing just 4lbs on 8 Feb 2013). Despite being tiny, though, I thought he seemed perfect. It was only when he was four weeks old that a health visitor said she was worried about his head shape. I was sure there was nothing wrong with him, but I agreed to see our family doctor anyway. Much to my surprise, the doctor referred us to a paediatrician, who referred us to a neurosurgeon, and before I knew it, my baby had a diagnosis of sagittal craniosynostosis when he was just six weeks old. Also, at around the same age he was separately diagnosed by another doctor as having developmental delay, because he was not smiling or tracking moving objects or faces.
Our neurosurgeon, at the famous Great Ormond Street Hospital for Sick Children in London, England, told us that we were very lucky to have such a quick diagnosis. He is one of the handful of doctors in the world who can perform spring-assisted surgery. This is a less invasive way of treating sagittal craniosynostosis in children who are very young (less than nine months old). It is a shorter operation than CVR, and there is less chance of infection, complication, or requiring a blood transfusion. Also, there is no need for post surgical helmet therapy. Although the success rate for this operation is extremely high, I was still worried about the idea of my baby being scheduled to have neurosurgery at the age of just four months. I repeatedly questioned the surgeon and the paediatrician to find out everything I could about why the operation was needed and how it would be done. I made the surgeon’s assistant draw me diagrams the day before the operation so I understood exactly where they were putting the springs!
The day of the operation was a bit of a blur – we got up very early and arrived at the hospital at about 7am. Badger had not eaten since the previous night but he was surprisingly calm! I took him down to the OR anteroom where the anaesthetists were waiting just before 8am, and I think they rang me to say it was all over at about 9.30! And by 10am I was with him in the recovery room feeding him a bottle of milk! We spent the rest of the day and the night in the hospital’s Koala neuro ward as Badger recovered from his operation, and were discharged at about lunchtime the next day. He had a bit of swelling around his eyes but he was in good spirits and as soon as we got home, immediately wanted to get on his playmat to have a play.
The change in his head shape was almost instant. I have a photo taken just four days after his operation and you can already see how much it has rounded out and smoothed out. His wound healed very quickly and he only needed a bit of ibuprofen and paracetamol for three days after his operation.
The other piece of good news is that almost immediately after the operation, he became a lot more responsive to faces and smiles and movement. The doctors now think that pressure in his head had been affecting his vision, and that the surgery relieved this.
The only big disadvantage with spring assisted surgery is that, having had an operation to put the springs in, you eventually need another one to take them out once they have done what they are supposed to do. So about three months after the first operation, we were back to hospital again for removal. This time the surgery was even quicker – just 45 minutes! Being a bit older, he was a bit more aware of what was going on, but he still took it in his stride. He was so chilled that we even walked home from the hospital!
We are now eight months post the second procedure and Badger’s head now looks completely normal. His scar is about 8cm long, has faded to white, and is almost invisible under his hair. Anyone meeting him for the first time would have no idea what he went through.
I have been told that there is a small chance that raised pressure in his head may still reoccur, so Badger will continue to have regular eye tests to check for papilloedema (swelling of the optic nerves) until he is seven years old. He also has been having physiotherapy because he was very late to roll and crawl, and is due to start speech and language therapy this month. Some children with sagittal have particular developmental delays due to their condition, and others are just late developers – the doctors don’t know yet which Badger is but they don’t want to take any chances just in case.
I hope that anyone reading this story takes heart that this condition really is very fixable, that the children recover extremely fast and well, and your lives will be entirely normal!
I would also encourage anyone faced with what seems like a straight choice between CVR and endoscopic-plus-helmet-therapy to investigate spring assisted surgery as an alternative option. In the US the leading practitioner using springs to treat sagittal craniosynostosis is Dr Lisa David, who works at Wake Forest University Hospital. You can read all about it here