We know that the bullying of children with unusual appearances is all too common in schools.

Preparing for hospital

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Children who are born with, or acquire, a condition that affects their appearance, can need treatment in a hospital or at a clinic. Sometimes these treatments are to improve function and sometimes to alter appearance.

This guide aims to:

  • Look at ways you can prepare yourself and your child for any hospital treatments or surgery

  • Help you to feel more confident in supporting your child during this time

  • Provide practical suggestions for when your child is returning home and back to nursery or school

Making decisions

Making decisions about treatment can be difficult. You may worry about:

  • How a disfigurement will affect your child’s self-confidence and friendships
  • Whether to let your child go through the treatment
  • The risks associated with it
  • Whether it will be successful

When considering treatment options, you might find it helpful to think about the following questions:

  • “What makes this the right option for my child at this time?”
  • “What difference will the treatment make to my child?” “What will they look like after?”
  • “What will it enable my child to do that they can’t currently do?”
  • “What will the treatment not change?”
  • “What other effects might there be, like scarring, or other changes?”
  • “Will it affect other things like my child’s movement, speech, feeding, sleeping, hearing, sight, etc.?”
  • “Can the operation wait until my child is older?”
  • “Do I know and understand all of the risks as well as the benefits?”
  • “How long will the recovery process take?”
  • “How much school will my child miss?”
  • “What else do I need to know?”

Talking it through with someone

It might be helpful to talk through how you feel with friends, relatives, or other families who have already been through treatment. You can also talk with a Changing Faces Practitioner. A practitioner cannot tell you what to do medically, but can help you to explore the options and your feelings about treatment. It can be useful to prepare in advance and write down any questions you have before you speak with your child’s medical care team, to make sure you get all the information you need.

Involving your child

Talking it over with your child about treatment will help you to find out what they want to do and what they may be worried about. You might want to involve your younger child in some aspects of a decision, such as whether to have the operation in term time or holidays. Older children may be more involved in making the decision whether to have treatment or surgery. NHS Choices provides guidelines on children under 16 consenting to treatment http://www.nhs.uk/chq/Pages/900.aspx?CategoryID=62&SubCategoryID=66

Either way, it may help to talk through all the steps with your child and explore how they feel about having the treatment.

Difficult decisions

When making difficult decisions you may still have some doubts or worries, however, it is important to take your time and feel you have made the best decision for you, your child, and your family at the time. Talking with a Changing Faces Practitioner can help you to do this.

My baby was born with a condition

Many babies with conditions also need medical treatment. This can be very distressing to see and you may naturally feel quite powerless and scared.

It can help to remind yourself that agreeing to medical treatment is a way of caring for your baby. It can feel difficult, especially if you cannot hold your baby through some of the treatments, however, touching, talking and being close by can all still be very comforting for both of you.

Preparing

Finding out

Finding out as much as possible about what will happen for your child during a hospital stay will make it easier for you to prepare your child. You can ask your doctor, nurse and the Patient Liaison Service (PALS) at your local hospital.

Although it can feel daunting, interacting with health professionals can be positive, it is an opportunity to get any questions you have answered. Julie says:

“We had our first meeting with the maxillofacial team…they were so lovely and totally spoilt Finn…the consultant gave him a new set of jigsaws to play with during our meeting and then take home with him, and the nurse gave him 9 stickers for being so good! It looks like he may need some teeth out and a small bone biopsy…I’m not as anxious about it all now and again feel more empowered, confident and reassured…”

Hospital websites also have information on treatments and life on a hospital ward. You may also want to ask about how your child will look after treatment. Hospital play therapists and psychologists can also help you to prepare your child. Our guides for children will also support your child to think about the questions they might want to ask – see Finding Out. Balancing home and work life can be tricky when your child needs medical care, and organisations such as ‘Contact A Family’ and ‘Working Families’ can offer information and support to working parents.

Talking with your child

Talking with your child about medical treatments may be something parents think will upset their child, but it will usually do the opposite and enable your child to worry less. Short, simple explanations, repeated at intervals, can help very young children to understand what is going to happen. A simple explanation might include:

  • the reason for the treatment
  • what might change
  • how your child might look
  • what your child might be able to do after treatment

Describing the treatment and what the doctor is going to do can be helpful, as well as reassuring your child that you will be there.

Remember to be honest about what you tell them. For example, don’t tell them treatment won’t hurt if you know it will, and don’t tell them that the doctor is going to make them all better – stick to the facts, as there are still no guarantees.

An example of talking with 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…’

Using stories & play

Reading stories, drawing, and playing with your child can be other useful ways to prepare for example, stories about children or animals going to hospital, drawing pictures of the ward, or playing hospitals. Hospital play specialists can help, as can visits to the ward or unit where your child will stay before treatment.

Providing Choice

Packing and choosing what to take with them can help children, even toddlers, to feel more in control. This is important when in an environment where lots of decisions and choices are being made for them. Young children might choose a favourite toy, older children a game or piece of clothing. Mobile phones can be essential for older children to ensure they feel in touch with the world and their friends.

Involving siblings

Talking with your child’s brothers and sisters can be helpful. Clear and simple explanations, reading books, giving choices about visiting and what to take for example, can all help to make a brother or sister to feel more involved. Siblings may feel anxious about their brother or sister’s treatment and well-being.

Preparing

Children react in different ways to being in hospital. Babies under 8 months old can be more easily comforted by parents and nursing staff. Toddlers may be more fearful of new places and may find it hard to be restricted. Crying, not eating, withdrawing or having tantrums are natural responses to being in hospital. You can reassure your child just by being with them and helping them with their reactions. These reactions will usually pass. Most children adapt and become more familiar and comfortable with their surroundings in time, especially if they feel reassured.

Look after yourself

Looking after your needs is important. You may find it helps to talk with family, friends and hospital staff, take regular breaks and ask for support or information. You might want another trusted adult there to support your child too or to be present for you if there are procedures that you may find difficult to watch or cope with.

After treatment

When your child returns from treatment you may feel a range of feelings – there may be relief, but also shock at what your child looks like straight after treatment, or you may feel alarmed by all the medical equipment or be worried about all the care your child needs. It may take time to get used to the changes and hard to see how your child will look when things have healed. These are difficult feelings to deal with and you may like to talk them through with someone.

After treatment, talking with your child, seeing how they feel or just being close by can all help with their recovery and give them reassurance.

Exploring the changes

Help your child to begin exploring the changes in their appearance when it seems right and at their pace. It is best to start talking about this before the dressings come off. Children often have unrealistic ideas about how they will look immediately after treatment. 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:

“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’s 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”.

Going home/back to school

Continuing to help your child talk about the changes can help them to adapt to being back home and to getting back into daily life. Encouraging your child to return to a normal routine and activities as soon as possible can help make things feel more ‘normal’. Talking about the changes to their appearance – what is the same and what is different, talking about how it looks and feels – may help them to also explain to other people.

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 back into school

Some children may take longer than others to settle back into school. You could check that the teachers, lunchtime supervisors and learning assistants all 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. 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”

“Peter has had surgery on his hands. He wants to be at school so he doesn’t miss out but he will not be able to write until his hand heals. He will have a support assistant to write for him and help at meal times. He wants you to join him for lunch though!”

For more information about preparing your child see Preparing for school.

Here is a link to our Education guides for school staff

Remember, it’s important to take some time to look after yourself – are you getting enough sleep, eating regularly? Talk to friends and family and don’t be afraid to seek more help if you need it. A

Changing Faces Practitioner can provide emotional support and practical advice to help you at this time.

Summary

  • Making decisions about treatment can be difficult
  • Talk the options through with someone
  • Involve your child in decisions about treatment
  • Gather information about your child’s treatment
  • Remember to include siblings who may be feeling anxious too
  • Talk with your child about changes in their appearance
  • Give yourself time to get used to the changes in your child following treatment
  • Speak to your child’s school to prepare for the transition back to school
  • Changing Faces offers support, advice and information