Epilepsy Talk

Children’s Brain Surgery…Preparing YOUR Child… | April 22, 2012

There is no “welcome” sign to the world of childhood brain surgery. And the resulting combination of fear, shock, and pain is almost too much to bear.

No amount of preparation or knowledge can help to ease or minimize the situation.

But preparing a child for surgery emotionally, is one of the most important things you can do. Surgery, without proper explanations and preparation, can traumatize a child.

Children who are shocked by the fact they are having surgery often act out; crying, screaming, and attempting to bite, kick or hit staff and family members. These children can be left with a fear of hospitals, surgery, doctors, nurses and health care in general.

And remember: children often know more than they let on. For example, they pick up information from overhearing parents and family members talking. And they’ll adopt their parent’s attitude about the surgery.

Also, you may not realize it, but your body language speaks volumes. If you say “It’s going to be OK,” but your body language says, “I’m terrified,” the child will usually adopt that same attitude of fear.

Therefore, in order to avoid their imaginations from going wild and expecting the worst, it’s a good idea to discuss the surgery with him or her, however young your child is. It will help prepare your child for surgery, if you explain what is going to happen in terms that are age-appropriate and easily understandable.

As one child says: “It helped me when my parents told me that I would be going through a tough, demanding time but that my diagnosis and treatment was something that my parents and I would go through together, and that even though it would be hard, we would be stronger if we worked together.”

Encourage your child to ask questions of the neurosurgeon, anesthesiologist, and nurses. Your child’s concerns may be more different than yours.

Example: You may ask about the length of surgery, but your child may be more concerned with how he/she will feel when they awake after surgery or how soon afterwards they can eat!

Children also tend to be much more straightforward than most adults and may have surprising questions such as “What does a brain feel like?” for the neurosurgeon.

Preparation for surgery will vary with the nature of your child and their age…

For example, older children, may view surgery as what they watch on TV. (By the way, most television dramas about epilepsy are incorrect.) A “reality check” meeting with the surgeon would be a good idea.

Most pediatric hospitals offer pre-surgery tours and information sessions to help relieve anxiety, and offer many programs to help their patients.

But a preschooler may ask, “Is my surgery tomorrow?” for weeks if he is told too soon.

If your child isn’t yet aware of the surgery, take the time to speak with the surgeon to obtain some basic information before you explain what is happening. This way, you’ll have answers to their questions when you do discuss the surgery. And you’ll be reassured also.

Here are a few important steps you can follow to ensure that the big day goes smoothly for everyone…

Be honest with your child. Don’t lie about needle sticks or some pain after the surgery. It’s best to say something like, “It will probably be a little bit sore after the surgery is finished but you will get pain medicine to help you feel better.”

If your child has a “comfort item” such as a favorite doll or a special blanket, make sure you bring it with you to the hospital.

If your child is an infant and drinks out of a bottle or “sippy cup,” or uses a pacifier, don’t forget to bring it with you to the hospital. Bring extra diapers and underwear, too.

For children approximately ages 3-5 years old, it is sometimes helpful to use pretend play to demonstrate some of the things that will happen before surgery. Sometimes a nurse will do this for you.

For example, you can demonstrate putting an IV in your child’s favorite doll before your child gets the IV herself. Or, the nurse can model taking the doll’s blood pressure before taking your child’s.

Your child will need to rest after surgery. Before the day of surgery, find things that your child can do while recuperating such as favorite movies, craft projects, or drawing and coloring tools.

And here are some reassuring explanations that will keep your child’s fears in check…

1. Anesthesia is to prevent pain during surgery.

2. You are not having surgery because you were bad, surgery is not a punishment.

3. If there is pain after surgery, there’s medication to make it better. Just tell me, your doctor or a nurse when you hurt.

4. We will see you when you (wake up, leave the OR, surgery ends, you are back in your hospital room.)

5. The doctors and nurses will be dressed in hats and masks and some even wear funny glasses to see better during surgery.

6. You will get special medicine to make you sleep during surgery, and the medicine will make sure you don’t wake up before the surgery is over.

7. You will wake up after the surgery, when the doctor is completely finished.

Try to avoid words like:

1. They will give you “gas.” To children, gas is something that we put in cars or a rude substance that comes from one’s bottom.

2. “Anesthetize.” This word sounds like euthanize and can cause problems if your child knows that the word euthanize means death.

3. “You will be put to sleep.” Again, many children are aware that when we put animals to sleep they die and may assume they will die also.

4. “You won’t wake up.” It’s important to stress that they will sleep through the surgery without feeling pain, but that they will wake after surgery is completed. Children fear both never waking and waking during the procedure.

5. “Be a big boy and don’t cry.” Children need to be encouraged to talk about their fears prior to surgery and their pain after surgery. Surgery is scary and children need to be encouraged to discuss their fears, so they can be discussed and alleviated.

6. “It is just like on TV.” First of all television is fiction. Second of all, TV shows depicting epilepsy are usually inaccurate. (But it is good drama. Have any of you watched “House”?)

Warning: Sometimes children regress developmentally. For example, some children who are potty trained may begin to wet the bed.

Understand that this is normal. What your child needs is love, attention and nurturing. That’s usually all it takes.

Also, don’t be surprised if your child bounces back much sooner than you expected. In fact, you may have difficulty enforcing necessary activity restrictions. Kids are pretty resilient!

Books to help your child get over the hurdle:

Buddy, Your Rainbow Friend

Buddy is a consistent visitor and friend who helps ease the transition from home to hospital through a variety of therapeutic interventions. By creating opportunities for gaining mastery and control, for expressing oneself, for medical play and other developmentally appropriate activities, as well as education and preparation for procedures, “Buddy” is an effective tool in enhancing coping skills and reducing stress.

Buddy introduces the opportunity to explore and play with actual medical equipment oftentimes seen and experienced by children throughout their hospitalization.

Buddy also gives children an opportunity to explore, act out and talk about their experiences through medical play.

Buddy is…

Approachable and non-threatening…a consistent visitor and friend…supports and enhances effective coping…provides support during procedures…facilitates medical play and mastery over medical experiences…reduces stress and provides positive experiences…helps children to identify, clarify, and express their feelings…ease the transition from home to hospital for patients and their siblings…assists in meeting the psychosocial and developmental needs of patients.


Do I Have to Go to the Hospital? A First Look at Going to the Hospital

This book speaks directly to preschool and early-grade kids, encouraging them to explore their feelings and talk to trusted elders about things that bother them. These titles also give them a start in developing basic social skills, as well as explain things that might otherwise make kids anxious. The book is filled with child-friendly color illustrations and easy-to-understand text. This reassuring book helps kids understand that sometimes, when they are sick, it is best that they go to a hospital. They can make new friends, have visitors, get special care from doctors and nurses — and best of all, get well again.


Harry Goes to the Hospital: A Story for Children about What it’s Like to be in the Hospital

Harry gets sick and he has to go to the hospital. But he’s never been there and he’s scared! There are lots of new people, he gets poked with needles, and he has to stay the night in a strange place. But with his parents’ comfort and the help of lots of doctors, nurses, and especially his stuffed rabbit Barney, Harry learns that the hospital doesn’t have to be a big, scary place.


Henry Goes for Surgery

This book is designed to make the medical processes more familiar by way of a little story, so less anxiety is experienced. If a child or someone the child knows is facing an operation, “Henry Goes for Surgery” will help make the situation more familiar. Designed for children of all ages. Read to the child and discuss the topics brought up. Because each surgery experience is unique, the adult may wish to discuss additional procedures that may be pertinent to them. “Henry Goes for Surgery” is written in general terms.


Some helpful links:

The BRAIN TRUST strives to create a healing exchange of information and support among people affected by neurological disorders; including survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources. Their current online support groups cover a range of brain tumor types and other special interests.


The Brain Tumor Society exists to find a cure for brain tumors and strive to improve the quality of life of brain tumor patients, survivors and their families by providing access to psychosocial support, information and resources.


The Brain Tumor Foundation for Children strives to provide emotional and informational support to families of children with brain tumors; to provide public education and awareness of the disease; to raise funds to support research for a cure; and to raise funds for the improvement in the treatment and the quality of life of the victims of pediatric brain tumor disease.


The Pediatric Brain Tumor Foundation (PBTF) seeks to find the cause of and cure for childhood brain tumors by supporting medical research, increase public awareness about the severity and prevalence of childhood brain tumors, aid in the early detection and treatment of childhood brain tumors, support a national database on all primary brain tumors, and provide educational and emotional support for children and families affected by this life-threatening disease.


The American Brain Tumor Association (ABTA) is a not-for-profit, independent organization. Not affiliated with any one institution, they serve individuals globally and award funds to researchers throughout the United States and Canada. The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families.


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  1. Lots of Good information in your post, I favorited your blog post so I can visit again in the future, Thanks.


    Comment by pipe — May 24, 2012 @ 10:10 AM

    • Hi Pipe!

      Thanks for the compliment. If you want to, you can subscribe (box on bottom of right column) and then you’ll be notified of each new article.

      (Sorry you missed the other 143 articles!!!) 😉


      Comment by Phylis Feiner Johnson — May 24, 2012 @ 10:20 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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