Hearing your child needs brain surgery (neurosurgery) can cause you stress and be upsetting. A team of specialists in neurosurgery will care for your child before, during and after the procedure.

You will meet your child’s neurosurgeon before the surgery, so be prepared to ask any questions that are on your mind. If your child is old enough, encourage them to ask questions and speak to the surgeon too. This could help to reduce the stressful emotions they may be experiencing too.

In this section, you will find information on the following:

  • To remove all of a tumour or as much as is safely possible. Even removing part of the tumour will relieve some symptoms your child may be experiencing. A “craniotomy” operating through a temporary window made in the skull bone is the most common type of operation.
  • To perform a biopsy – removing a small piece of the tumour for diagnosis.
  • To relieve pressure in the skull by inserting a shunt. This might be needed when the tumour is preventing the cerebrospinal fluid (CSF) from flowing around the brain and draining. This build-up of fluid is known as hydrocephalus, and it can increase pressure in the head and cause headaches, sickness and drowsiness.

Why is my child not having neurosurgery?

Some tumours are in deep, awkward to access locations, or involve critical structures such as the optic nerve or brainstem, where surgery to remove tissue would cause more harm than good.

Some tumours may be slow-growing and may not require surgery immediately. If this is the case, your child may be scanned and monitored regularly to assess symptoms and to look for tumour growth – this is often referred to as ‘watch and wait’. Your child’s consultant will go over each treatment option in detail and suggest what would be the best route of treatment.

It is important that you also make an informed decision about the treatment options offered, so do your research, ask questions, and if you are still not certain, ask to discuss things again with the treating team, consider asking about getting a second opinion or get in touch with brainstrust.

Before surgery

If your child is not an inpatient, they may have to attend the hospital for a preoperative visit a week or so before the surgery. This is to allow the neurosurgery or anaesthetic team to do all their assessments to ensure your child is well enough to go through surgery and to explain plans.

Before the surgery, the neurosurgeon will ask you to sign a consent form. By then you should already have discussed the strategy for treatment and the plans for the surgery but this is another opportunity to ask any questions you have regarding the surgery and what happens afterwards. Some older children with understanding of the plans and procedure can also sign the consent form.

Sometimes your child may have some additional tests, such as blood tests, a chest X-ray and some tests to check the heart. All these are precautionary tests to ensure their health and fitness is as good as it can be before the surgery.

Preparing yourself

You will be feeling a whirlwind of emotions when you hear that your child needs brain surgery. We are here to ensure that you feel in control when it comes to making decisions about your child’s treatment. Our patient guides are an excellent tool to get you started. Here are some questions you can ask the team:

  • Why is surgery an option?
  • What is the surgical process?
  • Where will the scar be?
  • What are the benefits and risks of surgery?
  • How can I explain the surgery to a child?
  • What are the side effects of surgery?
  • Is there any written information that I can take home to read?
  • How long will my child be in hospital for?
  • How long does recovery take?
  • What happens to the tumour after you have removed it? Can I donate it to research?
  • Can we have a tour of the department?

The more informed you are about the procedure, the easier you will find it to explain to your little one.

Here are some tips for parents or caregivers when a child is due to have surgery:

  1. Take care of yourself – to be able to give your family 100%, you need to ensure that you have support in place for yourself. Give us a call, and we can talk things through and help you build a supportive team around you.
  2. Read our difficult conversations guide to prepare yourself to have the chat with loved ones.
  3. Plan who will be at the hospital with you on the surgery day.

Preparing your child for brain surgery

As adults, we know that brain surgery is a big operation and there will be side effects following surgery. For older children, it may be best to prepare them a little for what to expect during their surgery and afterwards. It is okay not to have all the answers to your child’s questions. Talk to your team at the hospital. Play specialists are excellent at preparing young people for treatments. Here are some things you can do to prepare your child:

  • Tell them what side of the head their scar will be on.
  • Talk to them about general anaesthetic and how they will be in deep sleep and will not feel any pain during surgery.
  • Talk to them about the hospital, and tell them about the different nurses and doctors they might meet – our who’s who in your clinical team is a great guide.
  • Talk to them about how they will have to be in hospital after the surgery to recover.
  • Instil some control for your child. Ask them what they want to wear to the hospital, what toys they want to take with them and what music they want to listen to when they wake up. Little touches may make them feel more in control.

Almost all children will be asleep during their surgery, and this is done by general anaesthetic (GA). You will be given guidance on what your child can eat or drink prior to their surgery. Usually they are not allowed to eat for about six hours before their surgery.

In most departments, you are allowed to go in when your child is given GA. A specialist called an anaesthetist will manage your child’s anaesthesia before, during and after surgery. The anaesthetist will give the anaesthesia through a cannula, which is usually on your child’s hand. You can stay with your child until they fall asleep, and usually this happens pretty quickly.

This whole process may be overwhelming to watch, and surgery can take many hours. Take this time to tick some things off your list. Keep yourself busy. Go for a walk, have a shower, and eat something. Take care of yourself. Sometimes it is helpful to have someone else there with you. If you are alone and need someone to talk to, get in touch with brainstrust via our support line: 01983 292 405. 

A craniotomy is an operation on the skull to access the brain. A small area of your child’s head will be shaved, and a neurosurgeon will cut out a part of the skull (bone flap) to gain access to the area of the brain where the tumour is located. Your child will feel no pain during this process, as they will be in a deep sleep under GA.

Before a craniotomy, an MRI scan will be done to identify the exact location of the tumour for positioning the craniotomy accurately.   Some surgeons have technology where they can scan again by ultrasound or even do another MRI during the surgery. There are different types of surgeries, and what the neurosurgeon uses to monitor and image the tumour during surgery is dependent on the hospital and their available resources.

A craniotomy is commonly performed to remove all of the tumour or as much of the tumour as possible. If the tumour is fully removed, this is called total resection. If a part of the tumour is removed, this is referred to as partial resection or debulking.

Once the tumour has been removed, the neurosurgeon will put back the piece of skull, sometimes referred to as the ‘flap’. They will secure the flap usually with tiny metal brackets and then stitch the scalp back up.

Immediately after the surgery, your child will be taken to a recovery room. You are usually allowed to join your child at this point. When you first see your child, they will be hooked up to lots of machines that are observing each of their movements. Seeing this may be distressing, so try to mentally prepare yourself.

Your child will be kept in the recovery room to be observed and to come around from the general anaesthesia. The anaesthetist will be with you to support your child until they wake up. Don’t be alarmed if they don’t wake up straight away. This is quite common, and each child takes a different amount of time to wake up. Once it is safe to move your child, they will be transferred to an intensive care unit (ICU) or a high dependency unit (HDU). This is to ensure they have around-the-clock care and the best post-surgery recovery support.

Visiting your child in ICU or HDU should not be a problem. The staff are usually quite flexible on visiting times. However, at most hospitals, only immediate family are allowed in.

How long your child stays in the unit depends on how well their body recovers from the surgery. Regular assessments will be made, and you can stay with your child for as long as you want. When it is safe to move your child, they will be moved to a children’s surgery or oncology ward.

What checks will be done immediately after surgery?

In ICU or HDU, your child will be observed very regularly, by a nurse, who will carry out frequent neurological observations. These observations may include checking your child’s breathing, movement, eye movement, speech, alertness and responsiveness. They will compare each assessment and feedback given by you to see whether there is progress or if there is more they can do to help.

Your child will have an MRI usually in the first couple of days following surgery. This is to check that everything is settling down as it should be after the operation. On this scan, it is sometimes difficult to ascertain the exact reduction of the tumour, as early on there may still be brain swelling and excess brain fluid. For this reason, another scan will sometimes be done a few weeks later to give a clearer baseline postoperative picture.

Your child may have some or all of the devices below

  • Oxygen mask – this is usually put in place once your child is off the ventilator, to support their breathing. Often children try to take oxygen masks off, but the team on the ward will help you explain this to a young child.
  • Pulse oximeter – this is a little clip on your child’s finger that is used to measure their pulse and oxygen levels.
  • ECG monitor – small stickers will be placed on your child’s chest to help monitor their heart.
  • Central line – this is inserted under the skin of your child’s chest. It is usually used to obtain blood and give medication such as antibiotics or chemotherapy.
  • Cannulas and drips – these are used to give your child any medication, fluids and transfusions until your child can eat and drink again.
  • Drain – there may be a drain coming out of the bandage around your child’s head. This is to drain out any excess blood or fluids from the surgery site.
  • Catheter – this is a tube into your child’s bladder so the team can monitor how hydrated your child is and whether they need more fluids.
  • Nasogastric tube – this tube goes through your child’s nose and into their stomach. It can help to prevent your child from being sick, and it’s also a way to provide liquid food.

Seeing your child hooked up to many machines can be overwhelming. Some parents find it useful to find out what each machine does. Others much prefer to leave it to the professionals. There is no right or wrong way to feel. You will be surrounded by a great team of professionals, who will support you each step of the way.

If your child is old enough to understand or has lots of questions about the tubes and machinery around them, talk to them and tell them what each piece of equipment does, or you could ask the play specialist at the hospital, who will go through everything with them. Sometimes this can be done before the surgery to reduce anxiety in older children. It will also prepare your child for what to expect when they wake up from surgery, so it is not such a shock.

Your child’s head may have a bandage around it. This is usually kept on for the first few days  to let the surgery site heal. Most children have stitches that dissolve over time. However, if they have stitches or clips that need to come out, this is usually done about a week after their surgery.

Your child may wake up from surgery with some facial swelling and bruising, particularly around their forehead and eyes. This is perfectly normal after brain surgery and can even increase in the first couple of days, and should then settle over the next  few days.

There is no guarantee for when your child will resume their usual activities. It all depends on what part of the brain the tumour was in and what functions have been impacted.

For the first couple of days following surgery, your child’s clinical team will keep a close eye on your child and monitor any changes. They will also move your child’s limbs around and for older children might give them compression socks to wear in bed. This is to promote blood circulation around the body. This does not mean that your child will always be in bed following surgery; this is dependent on how well they are doing. A paediatric physiotherapist will be on hand to support any movement or walking.

Some symptoms your child had before surgery may still be there or may be worse than before. One of the reasons for this is because your child’s brain is healing from the shock of the surgery, and there will be swelling caused by the surgery. You may hear that ‘symptoms may get worse before they get better’. This is certainly the case in some children.

Side effects vary depending on the location of the tumour. Here are some side effects your child may experience following surgery:

  • Immediately after the surgery and for the day afterwards, your child will be in and out of sleep and feeling very drowsy. This is due to the anaesthesia.
  • Your child may feel nauseous. Let the team know if they mention this, as they can have some medication to prevent this feeling.
  • Headaches may occur due to the swelling caused by the surgery. Your child can be prescribed painkillers to manage pain.
  • Your child may have a sore throat due to the tube inserted during surgery to support their breathing, and also due to the lack of oral fluids.
  • Neurological fatigue is caused by the injury to the brain, both from the tumour and the surgery. Your child will probably feel drained of energy initially and want to rest more than usual for them.

You may notice your child has new symptoms that were not present before the surgery, and this may be distressing to see. Your child’s surgeon will be able to go through any new changes and discuss how to manage them well. Some symptoms may well settle or improve as recovery progresses.

The fluid around the brain and spine is called cerebrospinal fluid (CSF). In most cases, there is a natural drainage system to allow the fluid to circulate around and then drain away. One cause of headaches when your child has a brain tumour is a build-up of CSF in the brain. This build-up of fluid can be caused by the tumour blocking the pathways for normal circulation of the fluid or the fluid not being absorbed properly and starting to accumulate.

The build-up of fluid in the brain can cause increased pressure, sickness and headaches. This is also known as hydrocephalus. Sometimes it can occur because of the tumour itself, and sometimes it is brought on by scarring as an after effect of the surgery to remove the tumour.

To relieve the pressure, some children may require a surgical procedure to either temporarily or permanently drain the fluid. Temporary sterile surgical drains can be used to do this for a week or two (called “external ventricular drains”) and are then be taken out again.

Some children will need to have more permanent drainage of excess brain fluid in which case a longer tube called a shunt is placed into the brain’s fluid chambers (“ventricles”) and the other end is carefully passed under the skin, usually down to the abdominal cavity  (“peritoneum”) where the body automatically absorbs the fluid again.   Drains or shunts may be placed during the same surgery to remove the tumour, or can be done at a different time. You cannot usually see a shunt, as they are typically quite small and have a low profile under the skin and scalp. Sometimes however, you may be able to feel parts of the shunt such as a shunt valve which controls the rate and direction of the fluid flow.

Care guidance regarding the shunt and any problems to look out for will be given to you by the specialist team. Modern shunts are very robust and designed to last for many years and to allow your child to participate in all the activities they want to. Your child will be reviewed from time to time and scans done to check on a tumour will also show that a shunt is still working well.

The most accurate way to determine what type of tumour a child has is to perform a biopsy. A biopsy is a procedure to remove a very small amount of the tumour to be examined by a pathologist under a microscope. You can find more information about a biopsy procedure here.

Did this information make you feel more resourced, more confident or more in control?

This information is due for expert review July 2021.