Scoliosis surgery in children

If you or your child requires surgery for scoliosis you probably have many questions and concerns. This guide is designed to help address those concerns.

Preparing your child for spine surgery

Preparing your child for spine surgery

Being well prepared will help your child or teenager feel less anxious about their surgery, this in itself can reduce the emotional impact of the operation which can speed up recovery. Understandably, many parents are unsure about the best way to prepare their child, so we have put together some guidelines that may help.

How can I prepare for my child’s surgery?

At SSR we often receive calls from worried parents whose child or teenager has been put on the waiting list for surgery. We know that this is a difficult and often upsetting time. Parents are juggling their anxiety about their child having to undergo a serious operation and their concerns about how their child will cope with the surgery and how best to prepare them. Everyone deals with situations differently but occasionally children and teenagers will refuse to talk about what is happening or may show extreme emotions. It is important that families seek the support they need and gather all the information they can from their specialist teams to help them feel informed. This will help them manage these complex emotions.

It is a good idea to try to have some positive family time before surgery to distract from worries about the surgery and to build positive support networks. It is also important to remember that siblings need attention at this time too. They may be worried about their brother/sister and also may be jealous of all the attention they are getting. If they want to, involve them when possible in the preparations, and give them the same information given to the child having surgery so they are fully informed.

When should we tell our child about their surgery?

The best timing for a discussion varies, depending on the age and maturity of the child. Whilst teenagers will often be involved in discussions and decisions for weeks in advance, the timescale might differ for younger children. As a guideline, a week before the surgery itself is an appropriate amount of time for most children, and for children under 4 about 2-4 days before hospital, and again on the day.

If your child or teenager is unable to talk about the operation, or their behaviour is difficult to manage, a lot of patience may be needed. Using gentle encouragement with your child can help them to open up about their questions and fears. This approach can prevent your child from feeling pushed into having the surgery and will show that you are willing to listen when they are ready to talk.

For teenagers; printing out information and letting them know where they can find it will allow them to find out more in their own time, even if they aren’t ready to ask. It might also help to avoid them surfing the internet and being frightened by some of the inaccurate or exaggerated information that can be found on the web. Always use information from accredited sources such as from your child’s hospital or from our website.

Explaining the process to my child

It may be tempting not to talk to your child very much about their visit to the hospital in case you worry them, however, children of all ages generally cope much better if they understand what is going to happen and why it is necessary. It is important that they have a chance to ask questions and work through their concerns in advance.

The key is to provide information at a level your child can understand. Helping your child to understand why surgery is needed, and to become familiar with the hospital and what will happen there, will greatly reduce fear and distress when the time comes. So that you’re able to explain the process to your child, it helps to make sure that you understand it yourself and have had your own questions answered.

During appointments there is a lot of information to process, so it can be difficult to remember the questions you want to ask and to recall everything afterwards. It is a good idea to write down your questions before you speak with the surgeon, and to take notes during this meeting. It is natural that you will be anxious but children very easily pick up on and reflect their parents’ anxiety, being prepared and taking notes will help you manage your own worries and therefore help your child to feel more confident.

Having an anaesthetic is often one of the major causes of anxiety. For young children a simple, carefully-worded explanation can work well. One option might be to tell them that they will get some special medicine during the operation so they stay asleep, but that the medicine will be turned off when the operation has finished, and that they will wake up about 5 minutes later. It may be wise to avoid phrases such as ‘being put to sleep’ or ‘knocked out’ as these carry other meanings that may frighten a child. Young people can be worried that they will wake up during surgery, so they need to be reassured that this will not happen.

As a general rule, simple, honest, and reassuring explanations about the things that will happen at the hospital and the people they will meet will be of benefit to your child. It helps to encourage your child to talk about the operation and ask questions. For younger children, telling stories and using activities and games may help to prepare them. Encouraging your child to join in with some of the preparations, such as letting them help to pack their hospital bag, can help to reassure and involve them.

Explaining the process to my teenager

Teenagers may require a more detailed explanation of what will happen. It is important for them to feel in control of their health and body, so they should be included in discussions about the surgery and given the opportunity to ask questions of their surgeon. It may be helpful to give them a choice about how and when they receive information. Your child might want to choose whether they would prefer information to come from you or the surgeon, how much information they require.

This can be a lonely and confusing time for teenagers; sometimes the worry about their operation is accompanied by concerns about their appearance, or by feelings that they are different from their peers, or that no-one understands what they are going through. Sharing the stories of, or communicating directly with, other teenagers who share similar experiences can provide important support, call our helpline on 020 8964 1166 for supporting your teenager.

On the day of the surgery, encouraging your teenager to take items to hospital that will provide a distraction such as books, headphones, phones and tablets will help to reduce the stress of surgery and avoid a sense of isolation.

Teenagers may also be worried about missing school when exams are imminent, so it is important to liaise with school to make sure they can provide some work to do at home and to get reassurances of how they will help your child to catch up when they return to school. The hospital teaching staff will also help with this.

Children with Special Educational Needs

Children with special educational needs can find this process a particular challenge. This can be because of disruptions to their routine, unfamiliar environments with unfamiliar people, and the hunger caused by fasting before the operation. Additionally, some children with special needs are not able to understand what is happening and why.

The medical staff looking after your child will wish to cause as little upset and distress to your child as possible. Ringing the ward in advance of the operation to explain your child’s needs is a good idea, often resulting in a pre-admission visit so that the ward can be fully prepared to meet the needs of your child. If your child has an information booklet about them at school or for carers, it is a good idea to take this into the hospital to provide more information for staff.

Creating a time-line on paper which breaks down the visit to hospital into a series of steps can help children to manage one procedure at a time. This can be written or in the form of pictures and symbols, or both.

Post-surgery

After surgery, some children and young people will want to talk about and share their experiences, and if they do, this should be encouraged. Some teenagers create blogs, videos, and photo diaries. For younger children you can ask them what bits they liked and didn’t like, and whether being in hospital was how they thought it would be. They could draw pictures and you could write stories together about what happened. There are some young people who prefer to move on and regard the experience as a closed chapter, and if so, this should be respected.

Occasionally, some young people struggle to cope both before and after surgery. If you are concerned, you should speak to the hospital about getting extra support for your child which may include help with behaviour management strategies or emotional support.

Having a child who is undergoing surgery can be one of the most stressful and worrying times a parent can go through, however, we find that children and young people are generally very resilient and if both you, and your child, are prepared, this can help to significantly reduce anxiety and distress.

If you need help or advice please call our Helpline on 020 8964 1166 or email info@ssr.org.uk.

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