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Though the sibling who is well may truly be concerned about his brother or sister, there could be an element of jealousy involved. These are very confusing emotions for a child to deal with.

Try to share responsibilities.

If the strain of seeing your child go through a shunt placement or revision is becoming too much for you, let your spouse know.

Mark Twain once said, "When in doubt, tell the truth."

Talk to [ children ] truthfully about hydrocephalus in terms that they will understand.

Getting the Diagnosis, Part 3


The following excerpt is taken from Chapter Two of Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

The last of a three-part series focuses on the affect on families of a diagnosis of hydrocephalus. Articles include:

Effect on Siblings

Siblings of children with hydrocephalus may experience an array of emotions during the hospitalization of their ill brother or sister. These feelings can range from worry and fear to resentment and jealousy.

Children also have very active imaginations. Often, their fears about what is happening to their brother or sister are actually far worse than reality. As a parent, talk with your other children to discuss their fears and explain to them in terms they can understand how their brother or sister is doing. By talking through their fears and concerns, you can help prepare them for visits to the hospital, letting them know what to expect.

Siblings may feel completely overwhelmed when a brother or sister is ill. Visiting their sibling in the hospital can also be very stressful. They may see their brother or sister going through the pain and discomfort of surgery and treatment, and may notice their physical changes too. Weight gain or loss, a shaved head, bandages and IVs are also upsetting for children to see. Well siblings may worry that their brother or sister won't get better, or that they might catch hydrocephalus from them.

Siblings all cope differently with illness. If the sibling is a child, chances are his imagination is running wild. Answering his questions will require a detailed and honest approach. The condition of hydrocephalus will need to be explained in simple, age-appropriate terms. The answers should alleviate some of the child's fear.

When my sister was in the hospital for her last shunt revision, our brother, who also has a chronic illness, was acting very immature and unsupportive. This really angered me. I felt that as a family member, he could put his jealousies aside and be a better brother. Instead of being there by her side in the hospital, he was out partying with his friends. My sister's condition was very serious, and none of us knew if she would ever walk again due to a complication during the revision.

It wasn't until years later that he apologized for his behavior. He said that he was afraid of what might happen to his older sister, and that he couldn't bear to see her in the hospital, even though he was accustomed to having her visit him there.

Resentment and jealousy are common feelings experienced by siblings. These feelings are amplified when a brother or sister is suddenly hospitalized or undergoes an operation. Though the sibling who is well may truly be concerned about his brother or sister, there could be an element of jealousy involved. These are very confusing emotions for a child to deal with. A child may worry about his ill sibling, yet resent all the attention, gifts, and conversations that revolve around the ill sibling. Jealousy is usually compounded by the additional feeling of guilt for having these emotions.

Siblings of an ill brother or sister need to have the lines of communication open at all times. Let them know that they are deeply loved and valued. Many siblings are very compassionate and display a tremendous amount of strength.

My sister has had hydrocephalus for many years. At first, I was not aware of the symptoms and complications as we were both very little when she had her first operation. As a child, I knew she had some restrictions, such as not being able to do gymnastics or "head" the ball in soccer, but not much was explained to me.

I always wished I could find the right words to say to my sister when she would be self-conscious about the scars on her head, or when she would have to explain to a hairdresser where the scars came from.

I was away at college when she had two shunt revisions as an adult. When I first visited her in the hospital, it was distressing for me to see the hair shaved off half of her head, a large bandage around her head and tubes in her arms and nose. I prayed that this shunt would last at least 20 years (which is how long the previous one was supposed to last). I was scared for her, but wanted to be supportive and strong. I don't know if I achieved this.

My mom helped tremendously in terms of nursing her and helping her rehabilitate. In hindsight, it struck me as odd that she didn't receive any form of physical therapy. I tried to walk with my sister when I could. I felt bad that this had to happen to her at all. I don't like to sound full of pity, because I admire what my sister can do and how she copes with having hydrocephalus. I am proud of her.

I am always concerned about my sister; perhaps I feel that I need to protect her, but I know that she can take care of herself. Perhaps my need to protect is a way to feel like I am actively doing something.

It's good to be aware of these varied and normal emotional responses. Siblings of children with hydrocephalus need lots of love, attention, and comfort.

Effect on Marriage

Somewhere in your marriage vows the words "in sickness and in health" were probably mentioned. A diagnosis of hydrocephalus can truly be a test of your marriage, either bringing you closer together or pushing you apart. Emotions are high, and coping skills differ. Couples must simply survive the first few overwhelming weeks, then work together to rearrange the pieces in a new pattern.

If you or your spouse is the person with hydrocephalus

Hydrocephalus will affect you and your spouse differently; you will have different ways of coping with the stress. How hydrocephalus impacts each of you, and how you respond, also impacts the two of you as a couple.

If you have hydrocephalus, it is important that you talk openly with your spouse about your condition. If you haven't already done so, share information about your medical history. If you have copies of your medical records, let your spouse read through them to better understand what you've been through. By knowing more about your condition, your spouse can help you cope with the condition and help keep an eye out for the signs and symptoms of possible problems with your shunt.

If your spouse has hydrocephalus and is hospitalized, you may find being separated from your loved one for an extended period of time to be physically and emotionally draining. Even though you may have the support of family and friends, chances are you are still going home to an empty house or to children with many questions about the absent parent.

Utilize your individual strengths to make it through this rough time. Remember that your spouse is your best friend, and you should be able to talk together about how you are feeling, good or bad.

I have been married for one year, and my husband has to have neurosurgery. I am frightened by people having surgery in general. The surgery he probably has to have involves taking his whole shunt out, being in the hospital for 10 days on antibiotics and then putting a new sterilized shunt back in. He has been in the hospital four times since January, and has been on intravenous antibiotics at home since March. We have been married since July 1996. So, as you can see, it has not been an easy first year. However, we plan on sticking it out.

We believe that this will make our marriage stronger; it probably already has. But I definitely need support. I feel like I can't deal with my husband being sick anymore. Why can't we just have a break? We are only newlyweds! He is 33 years old and has never had a shunt infection until all this trouble started. We are both tired of hospitals and doctors.

Even though he has been sick, we still have plenty of good times. He has a great sense of humor, which also brings my humor out. I know that humor has been getting us through these rough times.

If your child has hydrocephalus

It is easy for worry and the extra strain of frequent doctor visits and hospitalization to take its toll on your marriage. Your child will be seeing his doctors and will also need to be taken to imaging centers and to the hospital. Once your child is out of the hospital, he will probably need some form of therapy, whether it is physical or psychological, to help him recover from surgery.

Those medical appointments, tests, hospitalizations, and advocating for and soothing your child take a lot of time and are stressful. More often than not, one parent is left to take the child to examinations or to visit the child in the hospital during the day while the other parent is at work. If at all possible, don't let this happen. Try to share responsibilities. While your child is in the hospital, take turns or alternate the days that you visit your child during the day so one parent doesn't feel responsible for spending all day there.

If the strain of seeing your child go through a shunt placement or revision is becoming too much for you, let your spouse know. Perhaps let your spouse take care of everything for a day to let you wind down or attempt to relax. When visiting the hospital, remember that your child will need rest to recover. Take time when your child is resting to go for a walk together or with friends.

In some ways, having an ill spouse or child is often harder on the people who are well than on the person who has the condition. It's very easy to let the condition get the best of you. Be open about your feelings. Ask for support.

Informing your child

Mark Twain once said, "When in doubt, tell the truth."

If your child is an infant or very young when first diagnosed with hydrocephalus, and she is fortunate not to have any shunt complications until later in her life, the question arises, "When do I tell my child about her condition?" The obvious answer is to explain the condition to her when she is old enough to begin understanding. If you are unsure about when or how to explain this, consult with your child's pediatrician or neurosurgeon and ask for advice. Do not wait to tell your child about her condition until there is a need for another shunt revision. This could traumatize your child.

I knew I'd been in the hospital for something when I was little, but was unaware of what actually happened to me. I had strange memories as a young child. I was in a big crib. My arms were tied to the side rails. The air was filled with the smell of rubbing alcohol. I was wearing a knit cap. I had the vivid memory of my mother crying as I hugged her, telling her, "I'm okay, Mommy." It wasn't until I was eight or nine years old that I found what I thought looked like a mosquito bite just above my hair line. As I took a closer look, the mark on my head wasn't so small after all. The scar went all the way across the front of my head. I then found more all over my scalp. I remember being very confused and upset by what I had discovered. What had happened to me? My parents then told me everything they knew in terms they thought I'd understand.

If you explain hydrocephalus to your child in terms she can understand, she will have a healthier attitude toward the condition and be able to better cope with it later in life.

I started when Carolyn was two to three. It happened that one of her shunt sites on her head got bumped and hurt. I called it her "shunt bump," and went on to have a long conversation with her about how she got the bump. I explained that the doctor put it there. As she got older, we went on to talk about the shunt line that is visible on her chest and that it was to drain fluid from her brain. That went along with the fact that the doctor looked at CT scans to see how well the shunt was working and what her brain looked like. We certainly surprised the neurosurgeon on a routine visit when Carolyn told him she knew he was the one who put the bumps on her head.

Since most children have vivid imaginations and cope differently than adults, it is important to talk to them truthfully about hydrocephalus in terms that they will understand. Medical terminology can be very complex, and it is important that the condition of hydrocephalus be explained to your child in a simple manner, using terms that are easy for the child to comprehend.

As a parent, you may be sorting through your own emotions, and having to provide an explanation to your child may prove to be overwhelming. If this is the case, it might be wise to ask your child's neurosurgeon to help explain the condition to your child with both parents present. One suggestion would be to create a forum, where the neurosurgeon explains the condition to the child and allows her to ask questions along the way. With the parents present, the child will be more relaxed and secure in the knowledge that everything will be okay. If your child's neurosurgeon is not able to talk with your child about hydrocephalus, ask the neurosurgeon if there is a counselor or neurological psychologist on staff who could.

Another suggestion is to find age-appropriate literature to help explain the condition to your child. Just Like Any Other Beagle is a coloring book which is published by Cordis Corporation, a shunt manufacturer. This coloring book explains what hydrocephalus is and how it is treated. The Human Brain Coloring Book, published by HarperPerennial, provides detailed illustrations of the structure of the brain, including the ventricular system and an explanation about cerebrospinal fluid. Ask your child's neurosurgeon or neurological psychologist for recommended age-appropriate books.

Reading and talking about hydrocephalus with your child will allow her to be more knowledgeable about her condition and helps her to dispel any fears or misconceptions she may have.


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