The right time to perform hemispherectomy is a decision that must be made in partnership between your family and your child’s medical team. There is no uniform medical view about the optimal timing of hemispherectomy surgery. It is generally accepted that the earlier in life that the surgery is performed, the more likely it is the remaining side of the brain can compensate for the disconnected or removed side.  

Most experts believe that earlier surgery also prevents the good or healthy hemisphere from being damaged by the effects of ongoing seizure activity. In some conditions where intellectual decline is a feature of the seizure disorder, earlier surgery may prevent further decline. While some doctors will advocate early surgery others believe that later surgery allows more transfer of function to the unaffected hemisphere, meaning the effects of the surgery will not be as immediately pronounced.  

Decisions about the surgery also need to consider the impact it will have on the child, especially in the case of progressive diseases where major functional deficits are not yet evident. Your family is in the best position to decide when the frequency and severity of your child’s seizures are having an unacceptable impact on quality of life, not only for your child but the whole family. Older children and adolescents can often say when they feel they are ready for surgery. 

The term hemispherectomy is used to describe several different surgical procedures that completely disconnect and disable one side of the brain.  The anatomical hemispherectomy removes most of the affected hemisphere, leaving the deeper brain structures intact.  The functional hemispherectomy, of which there are several variations, involves removing a much smaller amount of the affected hemisphere and disconnecting the remaining brain tissue.  The anatomical hemispherectomy is associated with a higher incidence of complications, so it is important that you understand the hemispherectomy surgery your child will be receiving and the potential consequences.  Your surgeon should be able to explain what hemispherectomy technique they will be performing and the reasons why they believe it is the best for your child 

The aim of hemispherectomy is to make your child seizure free, or at least to significantly reduce the seizures, and there is a very good likelihood this will achieved. Not having to live with frequent, severe and unpredictable seizures and the side-effects from multiple medications will be a big improvement to your child’s quality of life. The impact of hemispherectomy depends on which side of the brain is removed and the child’s age and condition before surgery. 

• Physical effects: All children will experience some paralysis on the opposite side of the body.  Most regain the ability to walk, though often with weakness in one leg and often the need for an ankle foot orthosis. Arm movement is limited, shoulder and elbow function return, but fine hand control rarely does. 

• Vision: Children lose half of their visual field in each eye (hemianopia). This is permanent but usually welladapted to in daily life. 

• Cognition: Many children show improved thinking skills after surgery, though challenges remain. 

• Right hemispherectomy: difficulties with maths and spatial awareness. 

• Left hemispherectomy: issues with speech, reading, and language (depending on age of the surgery) 

The surgery does not usually have any long-term effect on personality or memory. The temperament, nature and individuality of your child will remain after surgery. 

The immediate post-operative period can be difficult, and children will likely need to spend some time in either the Intensive Care or High Dependency Unit. Following surgery children require a high level of medical care and emotional support. They may have temporary behavioural problems, such as inability to control impulses. However, you will be surprised how quickly your child starts to improve. A few days after the surgery children will usually begin an intensive program of rehabilitation. Specialised medical and allied health professionals can help them relearn to walk, talk (if speech is affected) and regain some use of their affected arm.  

The length of the stay in hospital and the rehabilitation period can vary significantly between children. It is advisable that you ask your child’s medical team for their best estimates