A Parent's Guide: Coping with your Child's Scoliosis
Scoliosis is a problem that develops insidiously, usually during a child's adolescent growth spurt. Imagine sitting at home and seeing your daughter walk in to the room, when you notice for the first time that her shoulders are uneven. Even though you see her every day, eating dinner, doing homework, talking on the phone and playing with friends, you never noticed. Another way that parents first become aware their child has scoliosis comes as the result of school screening and a letter brought home by their child.
The story of how Michelle's parents found out about her disorder is similar to the one many parents have. Michelle was a typical teenager, growing up fast, becoming more independent and mature every day. Her parents never noticed that her back looked a bit different. When they asked her if she had ever noticed anything different about her back, she said she hadn't. However, when her parents took a closer look, much to their surprise, she had a significant bump on her rib cage. When she bent over the bump looked even bigger.
How could this have happened? Just yesterday, you thought that your daughter's back was normal. You can remember all of the times that you were giving her a bath and washing her back, buying her clothes, seeing her in her bathing suit, and there was no suggestion of a problem. Suddenly, her back looks so different. It seems that this has happened overnight.
Sound like an unusual experience? Not so, says Laureen, Michelle's mother. "I couldn't believe what I saw when my husband Robert showed me Michelle's back. Michelle was completely unaware that she had a problem but it was so obvious to us. I couldn't believe that we had never noticed something that was so pronounced on her back, but in hindsight, we hadn't really looked. We felt so guilty."
Laureen and Robert's experience is not uncommon, and there is no need to feel any guilt. Scoliosis usually occurs during puberty, a difficult time for most adolescents when they are trying to cope with the physical changes that their bodies are experiencing. Rather subtly, and very appropriately, they become very modest and private people. They no longer need their parents to help them dress or bathe, and now they do it with the door closed. This age appropriate behavior is why parents so often overlook the development of scoliosis.
A Parental ReactionFinding out that your child has scoliosis is shocking for most parents. "When I saw Michelle's back, tears filled my eyes. Of course, I didn't show it to Michelle, but I knew that something was terribly wrong." Michelle was unaware of her parent's concern, but also knew that she had a problem. "I didn't think that it would be such a big deal," Michelle remembers. Her family reacted by first making an appointment to see their family doctor, but then began doing research. "This was like therapy for me," says Laureen. "I searched every website about scoliosis and was overwhelmed by the amount of conflicting information. I went to the library, but the information was so technical that I didn't know if it was relevant to Michelle's situation."
"My doctor confirmed our fears. He ordered an x-ray and the curve was very obvious. I had no idea that the spine could look so crooked on the x-ray while the differences in the appearance of her back could be so subtle. Our doctor told me that he didn't know much about scoliosis, but referred me to a specialist that did."
A surprising number of parents have had this experience. The usual initial reaction to finding out that your child has a medical condition is often guilt, dismay, anger and frustration. How could this have passed you by? Rather than dwell on your perceived failure as a parent, there are a number of constructive and appropriate ways to deal with this situation.
Take the InitiativeCaring for an adolescent who has found out that there is something wrong with them can be difficult at best, but knowing how they feel will help you understand what you need to do. You must be the guiding force through the process, and help your child cope with their newly found problem.
Seek Credible Information about the ProblemBoth the parent and the child must take the initiative to learn as much as possible about scoliosis, its care and rehabilitation. "Michelle and I immediately went to the library and read all the information that we could find about scoliosis before we went for the first visit with our scoliosis doctor," remembers Laureen, "This was very therapeutic for both of us." Knowing what your loved one is going to go through will help you anticipate their needs and respond properly to them.
If You Don't Know, Ask!The treating surgeon and their staff should serve as valuable resources to educate you and your child about the nature of your problem and the available solutions. Often parents or children are intimidated by the busy setting of a doctor's practice and don't want to impose on the doctor's already limited time. However, it is essential that you open a clear avenue of communication with the treating surgeon so that your questions are answered to your satisfaction. If you want to know something, ask them. Don't worry about appearing "stupid" or overprotective.
Additionally, establish good communication with your child so that they can talk to you about exactly what they need without appearing weak or feeling like they're burdening you. If you don't understand what they need, ask them. Assuming you know what they want when you really don't can be annoying at best and dangerous at worst. Adolescents often feel isolated, as if no one around them is going through what they are going through. Feeling like they are not alone and are understood is important.
Emotional SupportOne of your most important jobs as a parent is to provide emotional support to your child. Whether it is getting used to the idea of wearing a brace or recovering from surgery, accepting this situation may be extremely difficult and requires patience, encouragement, consideration, and a positive attitude, both from the child and from you, the parent.
Have a Positive AttitudeIt's long been a scientific fact that a patient's attitude strongly affects their recovery. Pessimistic attitudes may prolong the recovery process, render it more painful and more frustrating, both for the patient and for the caregiver. A positive attitude will also give the patient a will to accept their situation and hasten recovery from whatever treatment is required.
However, it's not just the child's responsibility to be positive. You, as their parent, must maintain a good attitude and be as patient with them as possible. When your child is feeling down, as is very normal, it's your job to uplift them and encourage them. Being patient with their mood swings will help them regain a positive attitude, and you being positive sets a good example.
EncouragementEncouragement is different from being positive. Encouraging someone assures them that they're doing well and gives them hope for more progress later. When your child is feeling as though they're not making any progress, point out how far they've come. Talk to them about specific things that they can do now, that they couldn't do before. Many kids are encouraged by the positive aspects of their scoliosis surgery such as the fact that they are taller, and they no longer have a big bump on their back. Taking some photographs before surgery and looking at the result afterwards is helpful. Reviewing diary entries from before the surgery may help them re-live the difficulties they were having before, and compare them to their current situation.
Have an Appropriate Sense of Humor!Scoliosis surgery is not a laughing matter. However, a bit of humor is a great way to lighten up your child's moods if they're feeling down as long as you're sensitive. Even well intentioned remarks can be misinterpreted. It's emotionally trying coping with scoliosis or its treatment, without everyone making jokes at their expense. However, it is always a positive experience if you can find a bit of humor in an otherwise difficult situation.
Coping with the Prospect of Surgery"It came as no surprise after seeing the x-ray that Michelle would need surgery," remembers Laureen. Rather than accept the idea without question, Michelle and her mom began to read about scoliosis together. "Michelle started a scrapbook, and copied and recorded everything that she learned about her condition. We collected pictures of her back, her x-ray, relevant printouts from various websites that we found helpful. We read books from the library and our surgeon lent Michelle a book written by a teenager with scoliosis, and this was helpful in broadening her understanding of her condition." In this way, Michelle's own story began to unfold. As the pieces came together, she and her family felt very prepared to face her up-coming surgery. When the day of surgery arrived, many of their fears about surgery had been addressed by their search for credible information about scoliosis.
SurgeryThe day for surgery arrived before they knew it, but they felt prepared. "I was pretty nervous when I arrived at the hospital," recalls Michelle, "but they gave me some medicine that made me feel pretty goofy. The only time I remember being really scared was when they wheeled me back into the surgery room."
Laureen remembers going into the waiting room with all of the other parents who had kids having surgery. "This was comforting to me; that I was not alone. Although the four hours that Michelle was in surgery seemed like a lifetime, the nurse came out every now and then to let me know how things were going. My preparation made me feel confident that she would be okay. Fortunately, there were no real problems during the surgery and everything went well. I was very glad when it was over."
Recovery"When I remember waking up in my hospital room, my mom and dad were there with me at my side," recalls Michelle. "She seemed really sleepy, and her face was pretty puffy," says Laureen. "I was glad that she seemed to be pretty comfortable, because I expected a lot of pain." "I slept most of the time. I was so tired that I don't remember a lot about the first day. It was sure nice that my mom or dad could stay in my hospital room with me every night. In my room was a love seat which made out into a bed, and that's where one of them would sleep at night," remember Michelle.
This is the main type of support that kids need immediately after surgery. Knowing that their parents are there seems to relieve most of the fears about being out of control of their situation. The presence of a parent during those first days after surgery is so important to speeding the recovery of the child.
Laureen is emphatic that, "the nurses were terrific. Some of the nurses even stayed late after their shift was over to make sure that Michelle was okay." It is very important to let the nurses do their job. Nurses are professionals who usually have more experience with this period of recovery than most parents. Conflict often occurs when parents see their child in pain, or are concerned that moving them in bed is more painful than it should be. When you have these concerns, it is best to voice them in a non-confrontational manner with the nurse involved, away from the child. If they see you are concerned, it only serves to make them worry as well. Most medical professionals are willing to discuss reasonable concerns about the welfare of the patient in a non-confrontational environment. Usually this sort of interaction will result in a better understanding of the needs of the patient, the parents and the responsibilities of the staff helping to care for the child.
Going Home"By the time Michelle was ready to go home, we were excited to have her back." Wondering whether it would be hard to duplicate the attention that she received around the clock at the hospital, Laureen says, "I was ready to spoil her rotten! We were just so glad to have her back home that caring for her did not seem like a burden at all. I was surprised how quickly she got better. Each day, she was able to do more, and needed less rest. She was ready to go back to school in about a month."
The Final OutcomeMichelle had an excellent outcome from her surgery. She had excellent correction of her curve, was several inches taller, a rib hump is no longer visible, and an excellent prognosis for the future. In her writing about scoliosis, she has given something back to other kids facing the same experience.
Laureen notes that as a parent, "sharing the search for information with Michelle brought us closer together, not that we didn't have our 'moments,' as you would with any other teenager! We came through the experience together as a family, and are now that much stronger."
RisksPotential risks associated with scoliosis surgery and the instrumentation used to perform the procedure include but are not limited to:
- Tissue or nerve damage caused by improper positioning and placement of implants or instruments
- Disassembly, bending, and/or breakage of any or all of the components
- Nonunion (or pseudarthrosis), delayed union, or mal-union
- Postoperative change in spinal curvature, loss or correction, height, and/or reduction
- Pressure on the skin from component parts in patients with inadequate tissue coverage over the implant, possibly causing skin penetration, irritation, internal scaring, tissue death, and/or pain.
The MessageGet all the information that you can about your child's condition and share the experience together. Knowledge is a powerful tool to eliminate the normal fears with confronting a condition that you never knew existed until you found out unexpectedly. Communication with your doctor makes the treatment process less elusive and will give you the confidence that you are in control of the care of your child.
The materials on this Web site are for your general educational information only. Information you read on this Web site cannot replace the relationship that you have with your health care professional. We do not practice medicine or provide medical services or advice as a part of this Web site. You should always talk to your health care professional for diagnosis and treatment.