Surgery is the main treatment for craniosynostosis, and when it's carried out depends on your child's condition and your personal preferences.
Sometimes the surgery is carried out later in childhood to reduce the likelihood of the operation needing to be repeated.
Earlier surgery may be recommended if there are problems inside the head or with the eyes and jaw, or for cosmetic reasons.
You should talk to your child's doctors to decide when the operation should be carried out.
There are four NHS hospitals with specialist surgical units and teams with experience and expertise in carrying out this type of surgery. These are:
- John Radcliffe Hospital in Oxford
- Great Ormond Street Hospital in London
- Birmingham Children's Hospital
- Alder Hey Hospital in Liverpool
Surgery for craniosynostosis is usually carried out by a team of two surgeons who each have their own speciality. These are:
- a neurosurgeon – a specialist in the nervous system and brain
- a craniofacial surgeon – a specialist in surgery of the face, head and jaws
Open surgery for craniosynostosis is carried out under a general anaesthetic, which means your child will be asleep during the procedure and will not feel any pain.
The neurosurgeon will make an incision across the top of your child's scalp. This will leave a scar, but it will be hidden by their hair. The neurosurgeon will remove affected areas of skull.
The removed pieces of bone are reshaped by the craniofacial surgeon before being returned to a normal position in the skull. The incision will then be sealed using dissolvable stitches.
In some cases, endoscopic surgery may be an alternative surgical treatment.
This involves inserting a long, thin flexible tube with a light and a camera on the end (endoscope) into the scalp. The suture is then opened to allow the skull to continue growing normally.
Endoscopic surgery for craniosynostosis is usually only used in children younger than six months as the skull has not yet fully hardened.
The advantages of endoscopy surgery can include a shorter operation and quicker recovery.
After the operation
Extra precautions always have to be taken in cases where surgery is carried out on the skulls of very young children.
It is therefore likely your child would be transferred to a high dependency unit (HDU) for one or two days after the operation so their condition can be carefully monitored.
Most children are well enough to leave hospital around five days after having open surgery.
After surgery, most children will only experience mild pain, but it is common for them to develop significant swelling around their eyes. The swelling can often prevent them from opening their eyes.
Your child may find this annoying or distressing, but the swelling does not present a health risk and should go down after a few days.
It is likely your child will be asked to attend regular check-ups after having surgery so the future development of their skull can be monitored.
The check-ups will be quite frequent at first, such as every six weeks, before becoming less frequent as your child gets older. Most children will only require an annual check-up once they reach the age of six.