Your child’s medical treatment: Making decisions and supporting your child

When it comes to medical treatment for your child’s visible difference, making decisions, having conversations and providing support can be a real challenge.

At Changing Faces, we can’t provide medical advice. However, we can help you explore the options, guide you through conversations with your child, and provide advice on how you can support your child’s recovery. That’s what this page is for.

Making decisions about my child’s medical treatment

The decision to undergo medical treatment for your child’s visible difference will be informed by advice you get from medical professionals, but unless there is medical urgency, only you and your child can decide if and when treatment or surgery is right.

Anxieties about making treatment decisions

You may find there are all sorts of questions running through your head when you’re thinking about these decisions:

• Is it the right time?
• Would your child want this treatment now?
• Will they be OK with the choice you make in later life?
• What will the recovery time or side effects be?
• How will this impact on development or school?
• How will it affect the family, work or life generally?

Lots of parents and carers worry that they will make the wrong decision or that they will make a decision and the treatment will go wrong and it will be their fault. These are natural concerns and it’s normal to be worried. You are worried because you are considering all the options and want the best for your child.

Making balanced decisions

It’s natural to want to find medical treatments that will bring your child physical relief, enable them to function better or help them look how they want to. However, it is important to:

• Know all the facts.
• Explore the risks.
• Acknowledge the limitations.

It can be difficult if you have placed all your hope in medical treatment. Try to stay balanced and remember there may not be a solution – in most cases, it is rare for a visible difference to disappear with medical treatment. It may be worth bearing this in mind to avoid disappointment or unhappiness with the results.

What kind of medical treatment is needed?

Medical procedures are not necessarily the answer if you or your child are struggling emotionally or finding adaptation hard.

You could ask your child’s doctor or consultant to recommend other forms of treatment for their visible difference. You may also need other support or a combination of both medical and emotional support.

Questions to consider

These questions can be helpful when you are thinking about different treatment options and forms of treatment for a visible difference:

• What makes this the right option for my child at this time?
• Am I doing this for my child, for myself or trying to please others?
• What difference will the treatment make to my child’s life?
• What will it enable them to do differently?
• Am I being realistic?
• Do I understand all the risks as well as the benefits?
• Do I know what to expect from the treatment?
• How long will the recovery process take?
• What will my child look like after the treatment?
• What alternatives, if any, exist?
• Can the operation wait until my child is older?
• Would it be helpful to speak with other people who have undergone similar treatment?

Talking to my child about their medical treatment

Once you have informed yourself about the different treatment options available and their pros and cons, you need to talk to your child.

Parents sometimes worry that they will upset or worry their child. However, keeping them well-informed, in a calm way, can reassure your child, help them to understand better and worry less.

Getting my child involved

If your child is old enough, your child should be part of the decision-making process, with your role to guide and inform them and help them weigh up the positives and negatives of different forms of treatment as well as no treatment at all.

For children aged five to 12, share these guides and, depending on their age and independence, read with them or talk to them once they have finished their reading:

• Finding out about your visible difference as a young person.
• Having treatment for your visible difference.

What should I say?

Even for young children, short, simple explanations, repeated at intervals, can help them understand what is going to happen. A simple explanation might include:

• The reason for the treatment.
• A description of the treatment and what the doctor will do.
• What might change.
• What your child might look like or be able to do after treatment.
• Reassuring your child that you will be there.

Although you will want to reassure your child, remember to balance this with being honest about what you tell them.

For example, if you know the treatment is likely to hurt, avoid saying that it won’t be painful. At the same time, you can reassure them that the doctors will give them medicine to manage this and that the pain will go away in time.

Try to avoid saying the doctor is going to make them “all better” or that their visible difference will be completely removed – stick to the facts, there are no total guarantees.

Here is an example of how you could talk to a young child:

“Today we are going to go to the hospital. The doctors who look after you are going to have a look at your eyes and your head. We will come back next week and then you will stay in a bed next to other children for a couple of nights. One of us will stay in a bed next to you. The doctors are going to make your head bigger. They will give you some medicine to help you sleep. When you wake up we will be here and you will be sore but you will feel better soon.”

Use stories and play

For young children, reading, drawing and using play can be useful ways to prepare them.

For example, you might read stories about children or animals going to hospital, draw a picture of the ward together or “play” hospitals. Hospital play specialists can also help, as can visits to the ward or unit where your child will stay.

Involving siblings

Talking to siblings can be helpful. Again, it is good to stick to clear and simple explanations or to read books or simple information sheets.

Siblings will naturally be concerned, but also can be helpful to the child who is due to receive treatment by helping to explain and offering support and comfort.

Some good ways to involve siblings include:

• Choice about when to visit.
• Considering what they might like to take to the hospital.
• Drawing a “get well” card or choosing a treat.

Managing siblings’ anxiety

Siblings may feel anxiety about their brother or sister’s wellbeing and about being separated from them – or from you.

Explaining why their brother or sister is having the treatment can help. For example:

“Your sister needs me to be at the hospital for the next week. I will miss you but I will talk to you every day and I want to hear all about what you have been doing at school. I will see you after school on Wednesday and then I will be home on Saturday. If you want to talk to me you can ring me.”

Parents can understandably feel very torn about being away from other children but remember – you are doing your best for all your children.

How will my child react to being in hospital?

Children react in different ways to being in hospital. Babies under eight months old can usually be more easily comforted by parents and nursing staff. However, toddlers may be fearful of new places or find it hard to be restricted to their beds instead of running around as they are used to. Older children may feel anxious or upset.

There are things you can do to make it easier for them. Take a look at our guide to hospital stays, which will help you prepare for the way your child might react, how to make it easier for them and how to deal with any difficult experiences.

Supporting my child after their treatment

It can be a very difficult and challenging time if your child needs treatment for their visible difference. Things to expect from yourself include:

• Often you will find yourself feeling anxious and running on adrenaline whilst your child is in hospital – trying to juggle everything and making sure your child and everyone else in the family is OK.
• When medical treatment is over, you may feel drained. You will probably start to think about what has happened and experience a lot of emotion.

What my child needs

It is after medical treatment that you and your child will start to adjust to any changes arising from treatment. Talking to your child, seeing how they feel or just being close by can all help with their recovery and give them reassurance.

Help your child to begin exploring the changes in their appearance when it seems right and do so at their pace.

Helping my child prepare for changes

It is best to help your child prepare for any changes in appearance from the medical treatment before their dressings are removed.

Often there may be temporary swelling, bruising or bleeding and this may look upsetting to you and your child. You can help by reminding them that things will look different in the future and helping them to talk about how the changes look and feel to them. For example:

• “Because of the surgery your face might look sore and there might be some bruising – like you get when you fall over. Like your knee got better after you fell over and the bruising went away, this will go away too.”
• “Your jaw is bandaged up but I can see it has changed shape and looks a bit wider than before. Can you feel how it has changed?”
• “Your right side looks a bit swollen but I can see the skin on your cheek looks more like the skin on your forehead now. The colour is the same and it feels the same. What do you think?”
• “Can you see how your mouth has changed shape? The bone from your hip is in your gum. Now your new teeth can come through.”

Helping my child if they feel different

As well as looking different, your child might notice that they feel different or other changes. This can be difficult if they have already gone through changes when acquiring their visible difference.

For example, they might eat differently if they have had surgery on their mouth or jaw. You might want to ask your child if things feel different, and explain that this is because of their operation and that although it feels a bit funny now, they will get used to it.

Adjusting after medical treatment

Things that can be helpful to consider:

• Helping your child talk about the changes can enable them to adapt to being back home and get back into daily life.
• Encouraging your child to return to a daily routine and activities as soon as possible can help make things feel more “normal”.
• Talking about the changes to their appearance may help them to also explain to other people. Focus on what is the same and what is different, talking about how it looks and feels.
• Expect different behaviour. A child might behave differently for a time after being in hospital. A baby might experience some delay in walking and talking, a young child might be “clingier” and an older child might be more nervous or angry for a while.
• Being patient and encouraging your child can reassure them and usually they will settle down over time.

Settling into school

Some children may take longer than others to settle back into school. You could check that the teachers, teaching assistants, lunchtime supervisors and other staff understand your child’s specific needs.

It’s helpful if everyone knows what to say and do when someone stares, comments, or asks a question about your child’s appearance and you can use our resources to help you with that.

If you and your child decide together that you would like the teacher to say something to the class, this can be agreed in advance. Here are some examples:

“John was in an accident. He was burnt on his arms and legs. His skin looks red and lumpy where he got burnt. He will have to wear something called a pressure garment on his arms to help the scars heal. He would love to play football but his legs are stiff and still a bit sore so he will only manage a couple of minutes at a time. John may not want to talk about this so it would be really helpful not to ask him lots of questions about it.”

“Ahana has had surgery on her hands. She wants to be at school so she doesn’t miss out but will not be able to write until her hand heals. She will have a support assistant to write for her and help at mealtimes. She wants you to join her for lunch though!”