Most children and parents are more comfortable with their visit to the hospital if they know what will happen when they arrive. As a parent, you can play an important role in preparing your child to stay in the hospital for an operation because you know your child better than anyone in the hospital. Many parents are unsure of how they can best help their children.
Parents often have many feelings when they learn that their child needs an operation. Fear, worry, helplessness, even anger, are common. Your feelings about your child's operation and your understanding of what is going to happen to your child can affect how your child copes with her visit to the hospital. Children are very good at picking up on their parents' feelings, even when they try to hide them.
Why does your child need surgery?
The treatment team will recommend surgery to diagnose or treat the brain tumour. Because the technology has improved, surgery is much safer now than in the past. The doctor who does the operation is called a neurosurgeon. Here are some possible reasons why the neurosurgeon may do surgery:
- To take out a piece of the tumour. This is called a biopsy. This allows the study of the tumour cells under a microscope and is the best way to find out the type of tumour.
- To remove the tumour. During surgery, part or all of the tumour can be removed from the brain. This is called resection.
- To place a shunt inside a part of the brain called the ventricle. The tumour may be blocking the flow of cerebrospinal fluid (CSF). This is called hydrocephalus. A shunt relieves hydrocephalus.
Preparing yourself for your child’s surgery
Here are a few tips to help you prepare yourself for your child's operation.
Learn about your child's surgery
If you learn about your child's operation, you will be able to prepare your child for it. Your child's surgeon will meet with you before the operation to explain what will be done during the operation and what will happen afterwards. The nurse in the clinic or on the unit may also give you information about your child's operation and hospital stay.
Ask if there is any written information (for example, booklets) about your child's operation. Ask your nurse to go over this information with you. Ask the nurse to explain any words or ideas you don't understand. Many people don't understand some of the words doctors and nurses use.
Ask questions
You may want to ask some of these questions:
- How long will the operation take?
- Where will I wait during the operation?
- How will I know when the operation is over?
- Where will my child be when I first see her?
- When can my child eat?
- How will my child's pain be managed after the operation?
- When will my child be ready to go home?
- How long will it be before my child can go back to school or out to play?
Find out who can help you prepare your child for surgery
There are other people in the hospital who can help you prepare your child for surgery:
- clinical nurse specialist
- child life specialist
- social worker
- preparation program nurse coordinator
The nurse in the clinic can help you contact these people if you have specific questions about preparing your child for the operation.
Preparing your child for surgery
It is recommended that all children having an operation be prepared. How and when you prepare your child for an operation depends on their age and how you think your child will cope with coming to the hospital for an operation.
All children (except infants) should be told that they:
- are going to the hospital
- will be having an operation
- will be given some basic information about what will happen when they are in the hospital
As a parent, you know best how much information about the operation your child can handle and how your child usually copes with situations that are new or stressful. Please let the doctors and nurses know how you think your child will act before and after the operation. Once at the hospital, tell them about how you prepared your child and how you answered their questions.
Here are some tips to help you prepare your child for an operation:
- Do give simple explanations using words your child understands. By answering your child's questions honestly and talking simply about coming to the hospital for an operation, you can help to correct any wrong information or ideas your child may have.
- Do explain that the operation will help your child get better. Reasons given for the operation can include such things as “help you grow,” “help you stay strong and healthy,” or “help a part of your body do its job.”
- Do tell your child when they will have the operation and how long the hospital stay will be. Let your child know when you will be able to stay with them and how often you will visit.
- Do encourage your child to talk about the operation and ask questions. Books with stories about hospitals can help your child understand more about going to the hospital. Ask your child to draw a picture about going to the hospital and write the story as they tell it to you. Then talk about the picture or read the story with your child.
- Sometimes you can find out a lot about how your child is feeling by watching your child at play. Playing hospital with puppets, dolls, and stuffed animals before and after the operation can help your child understand and cope with what happened in the hospital.
- Do tell your child that they may bring a favourite toy, doll, soother, or blanket to the operating room and that it will be there when they wake up after the operation. Knowing that they can have something special close by at all times may help your child feel more relaxed before going to the hospital. Your child may enjoy helping you pack these items before coming to the hospital.
- Do tell your child that while she is in the hospital the nurse and doctor will talk about what’s going to happen and answer their questions.
- Do explain that your child will not feel, hear, or see anything during the operation because of a special sleep medicine (anesthetic). Most children need to know that they will not wake up during the operation but that they will wake up after it is over. Because most children have heard about a pet being put to sleep and never waking up again, try not to use these words to describe the sleep medicine.
- Do not give answers to questions you don't know the answers to. If you aren't sure how to answer your child's questions tell them that you don't know but you'll find out. You can write down the questions and ask your child's nurse or doctor for more information.
- Do not make promises that you may not be able to keep when you talk to your child about the operation and the hospital. By giving accurate information without making any promises that may not be kept — like promising there will be no pain — your child will more easily adapt to any changes needed and be more trusting.
- Do not promise your child that there will be no needles. Most children in hospital do have a needle at some time. Tell your child that she will learn some ways to make it easier to have a needle.
- Do not promise your child that they will have no pain. Children have different amounts of discomfort after operations. Fear of pain is probably the most common fear about having an operation. In addition to pain medicine, you and your child will be shown other ways to help ease any discomfort.
Telling your child about the surgery
When you tell your child about the operation depends on your child's age and how anxious you think your child will be. It is probably best to tell a young child only a few days before the operation, but older children may need more time to prepare themselves. You should use the ages noted here only as a guideline to help you to prepare your child. You may need to make some changes depending on your child’s ability to understand.
Young infants (newborns to eight months)
When your infant is having an operation, you will probably find it more stressful than your child will. It is normal to be concerned and worried about your baby. But remember — young infants usually separate easily from their parents and are comforted quickly by those who are caring for them.
Older infants and toddlers (eight months to two years)
Most children between eight months and two years of age have some difficulty separating from their parents. Older infants will often make strange with those caring for them in the hospital. Tell your child's nurse or doctor how you think your child will react, so that you and the staff can plan how to cope with your child's behaviour.
Toddlers do not understand time in the same way adults do. Tell your child about her operation a day or two before the operation. Your toddler won't be able to remember information given too far ahead.
Pre-school and young school-aged children (three to six years)
Most children aged three to six years can understand simple explanations about their operations. Since they do not fully understand why they need the operation, they may become angry about it or feel that it is a punishment. It is better to give your child simple information and make them feel comfortable about the operation by talking about their feelings as often as possible.
These children may also have a limited understanding of time and should not be told too far ahead of the time of the operation. A few days before the operation, talk to your child about the need for a stay in the hospital. It is very important that you be honest about where your child is going on the day of the operation.
Older school-aged children (seven to 11 years)
Children between seven and 11 years are better able to understand the reason for an operation and what is going to happen to them. For this reason, about a week before the operation, talk to your child about the need for staying in the hospital. Your child should be given plenty of time to ask questions and talk about their fears. At this age, children may have fears about waking up during the operation, and about pain and changes in their body. Talk about your child's fears honestly and reassure them often. If too much detail is upsetting, give only simple, basic information.
Teenagers (12 to 16 years)
Teenagers have a better understanding of what is going on with their bodies and usually understand the reason for an operation. Teenagers should be included in discussions or decisions about their care and treatment. When you talk about the need for the operation, encourage your teenager to ask questions and to discuss their fears and concerns. They may wish to write down questions and bring them to the hospital, or call and speak with the doctor or nurse.
Teenagers may fear that their dignity, modesty, or sexuality will not be respected. Something as simple as telling them that they can come to the operating room wearing their underpants can be extremely reassuring. They may also be afraid of being injured or of dying. These worries can be addressed by explaining what will happen before, during, and after the operation, and by answering any questions they may have. Like younger children, teenagers may be afraid of experiencing pain or of waking up during the operation. These fears need to be discussed as well.
Most teenagers want to be independent of their parents, but often when they are ill or under stress they also want their parents' support. Ask your teen how you can help them while they are in the hospital. For example, your teen may want you to ask the questions that they find difficult to ask or may ask you to hold their hand while they are having a test.
Special needs children
Children who have been in the hospital often or have had many operations sometimes become quiet or withdrawn when they face yet another operation. Being silent may mean that the child is very anxious. If this is true for your child, it is important to tell your doctor or nurse ahead of time. They will make a special effort to help support your child. If those caring for your child understand how your child reacts, they will be better able to respond to whatever fears or worries your child may have.
If your child has a condition (e.g., blindness, deafness, or delays in development) that may make it difficult to talk to them, they will need special preparation. Those caring for your child need to know how best to talk to them. Your child can wear hearing aids or glasses into the operating room. These will be returned soon after the operation.
What happens before the surgery?
You may be told about the supports and resources that may help you. For example, you may meet with a social worker, who can guide you and answer questions over the coming days and weeks. If the surgery does not need to be done urgently, you may have time to prepare yourself and your child.
Before the operation, the surgeon will explain the procedure to you and ask if you have any questions. Then you will have to sign a consent form to allow them to do the surgery.
Your child may have some tests, such as blood tests, a CT scan, an MRI, or a lumbar puncture to learn as much as possible about the tumour before the surgery.
Immediately before surgery
Your child will not be allowed to eat or drink for a number of hours before the operation. If they eat or drink, they might throw up. This could hurt their lungs when they have the anaesthetic, the medicine used to make them sleep during the operation.
Immediately before surgery, your child will have an intravenous line (IV) in their arm to give them fluids and some medicines. Some of the medicines she will be taking, either by IV or by mouth, are:
- a steroid called dexamethasone to reduce swelling around the tumour
- antibiotics to prevent infection
- pain medicines
- ranitidine to reduce acid in the stomach
Your child will have their hair washed before the operation. They will have some of their hair shaved, but the team will try and shave as little as possible.
You will come to the waiting room with your child before the operation. Along with the neurosurgeon, another doctor called an anaesthetist and the operating room nurse will come out and talk to you. They will be wearing their special clothes for the surgery. This is where you say good-bye to your child. They will then walk or be carried into the operating room.
You can tell your child what they will see in the operating room. It is a large room with bright lights and lots of equipment. People will be wearing masks, gowns, and hats. There will be a bed in the middle of the room. The nurse will help your child get onto the bed and make sure they are comfortable.
Then your child will be given an anaesthetic.
During the operation, you may stay in the waiting room. The operation can take six to 12 hours.