Empowering Guide for Parents: Preparing Your Child and Yourself for Surgery

Being told your child needs surgery can be hugely shocking. It can arouse so many feelings and puts you in a place of deep vulnerability which may be difficult to acknowledge or express. The information here is offered as support for a time in your life which will be memorable but hopefully with the potential too for positivity and personal empowerment for everyone involved. Diagnosis and Details Decide whether you think it is appropriate for your child to be present when a medical professional is explaining things to you for the first time – it is difficult to be fully present to your child in a moment of high stress so be aware that this is a decision you may need to prepare for in advance by ensuring you have someone come along with you who your child will happily stay with while you have one-to-one time with the doctor.

If your child is of an age when a direct conversation with the doctor feels appropriate you could arrange this for a second visit, but also bear in mind that the language used by doctors may be different to the way you might choose to present something knowing your child as you do.

Similarly, try to avoid talking about your child’s condition too much with them in earshot – they will perceive your anxieties through your tone of voice and may feel disconcerted about the amount of ‘hospital chat’. If discussing surgery etc you can include your child in the conversation so that they don’t feel talked ‘about’. Your child will know how to go about their life ‘as normal’ so follow them in enjoying the things you can do together and be sensitive to when conversation feels too hospital-centric. Preparing your child for surgery Role-play, role-play, role-play. Introduce themes (pre-operative nil-by-mouth/anaesthesia/waking up after surgery/bandages/blood tests) and follow your child’s lead with interest and enthusiasm. Swap roles, play different characters and try to be realistic without being overly dramatic. Be sensitive to when they don’t want to role-play either and have trust that your child will know how to meet their own interests by initiating play - just be ready to be involved. Dress-up uniforms and doctors kits make for excellent accessories in helping your child feel more familiar with a future procedure. Cheap boxes of plasters can be purchased for practising blood tests etc. A used roll-on deodorant and some aloe vera gel make for a fun substitute ECHO test! With a fully-verbal child you can start to build a picture in their mind of hospital life by inviting them to consider scenarios and tell you what might happen. For example: Parent: Mummy will want to be with you all the time, but who would look after you if I have to go and see your brother/sister? Child: Daddy could! Parent: Yes, I think that would work really well. What if daddy was looking after your brother/sister at the hotel/play area and I needed a wee? Who would look after you? Child: The nurse! Parent: Yes, the nurse, and they are trained especially to look after children! While it’s tempting to over-simplify medical language it can sometimes be helpful for a child to know what the meaning of ‘canula’, ‘chest drain’, ‘incision’ (which actually sounds less brutal than ‘cut open’) so they don’t feel too in-the-dark with the language being used. Depending on the child’s age you can give tests more easily identifiable names. For example, an ECHO might be called the ‘jelly test’ and an ECG ‘the stickers and wires’ test and anaesthetic ‘penguin milk’ because it’s white and cold. Be careful with using the term ‘being put to sleep’ for the anaesthesia with a child who may have knowledge of this with pets.It’s important your child fully understands that the anaesthetic is similar to sleep but not normal sleep because they won’t be able to feel anything or be woken up until they are ready.

If you are able to visit hospital play areas or the cafe during pre-admission or during another appointment it may help your child to build a positive association with their visit. It will also be helpful to familiarise the family with any play areas if you have more than one child.

If your child has a bad experience at a visit, you may want to ask the hospital if they have a play assistant available at a subsequent visit who might introduce a playfulness your child will appreciate and who may be able to offer distraction therapy during tests your child finds upsetting. Your child may enjoy being involved with packing their own bag for hospital – things to consider include:

• Nightwear which can be easily put on and taken off – this may mean pyjama tops with buttons (several spares too)
• Slippers, knickers and socks
• A set of comfy going-home clothing
• Table top games
• Notebook and crayons
• Favourite cuddly toy
• Books
• DVD player and DVDs (TV is now paid-for in hospital)
• A washbag with toothbrush, toothpaste, flannel, mirror
• Small plastic shot glasses and straws (you can cut long ones in half)

Preparing yourself for surgery Remember that the attachment relationship you have been working on so carefully is a strong connection capable of weathering the trauma of surgery. Have confidence that you can and will be everything your little one needs in that different environment. Remind yourself how skilled your child is at seeking to get this needs met and that even if you can't meet them all on that particular day your connection can't be broken by this, it simply requires you to be fully present to it and to your child. Your child will prepare you well through role-play as this will help you go through the experience in your mind. Visualising your hospital stay step-by-step will help trigger questions you hadn’t thought of. You may want to look at images of other children in intensive care to prepare yourself for what your child will look like. You may be invited to visit intensive care and the ward your child will stay on while at a pre-admission clinic or other appointment. Be aware that those you invite to support you during your stay, especially if you have other children, will need to be people you trust implicitly, people who your other children really enjoy spending time with and who will accept you in your worst state.

You may be upset, exhausted, angry, withdrawn and you’ll need understanding adults to help you meet basic needs too; such as providing you with food and drink.

Sometimes you may find friends offer a more relaxed dynamic - it really depends very much on your personal circumstances. Be prepared to be faced with some very counter-intuitive situations – your child may be asking for water which you can’t give them for medical reasons, you may need to wake your deeply sleeping child for medications, they may want to nurse when they are nil-by-mouth pre-op. There is an element of surrendering to the process and trusting in the necessity and short-term nature of these moments. When packing your own clothing you may want to consider:

• Comfortable tracksuit trousers as you’ll be bent over beds in various positions!
• Comfortable tops with easy access for breastfeeding if your child is still nursing
• Slippers for the ward
• Respectable nightwear if you plan to sleep on the ward
• A couple of hair ties if you have long hair (you’ll be leaning over your child a lot)
• A wash bag with toiletries
• Nutritional supplements for you and your child
• Healthy snacks for you and your child

Be Realistic In discussing a hospital stay and surgery with your child be realistic – it’s easy to want to make it sound like an adventure or something very exciting but your child’s frame of experience may be different. If there are things you know your child will enjoy its fine to explain they can play with it (a rocking horse/push along car) but resist the temptation to interpret and evaluate things on their behalf. Some parts of their stay will not be pleasant or comfortable for them and if they are not aware the surprise may be more upsetting. On Arriving in Hospital Watch how the nurses wash their hands and follow suit! You’ll soon be washing your hands before and after contact – and don’t forget how dirty a mobile phone can be. If you find yourself feeling anxious and nervous before surgery, take a few minutes out to find your centre, prepare yourself to be grounded for your child and have trust in your abilities to be strong and present for them when they really need you...you’re about to really live what it means to be a parent. Things might move a lot more quickly than you might have imagined, there may be little time after admission to do the things you might have planned to – so be ready. On Anaesthesia The anaesthetist will speak to you and your child prior to surgery to decide if your child is calm enough not to require a pre-med. You will also discuss whether the anaesthesia will be administered intravenously or via gas.

You can usually carry your child in your arms to the theatre and hold them while they administer the anaesthesia.

Your child will be very tired by this point from not eating or drinking for several (5) hours prior. Hold them in the most comforting way you can, love them through the discomfort and hold them tight because when the anaesthesia kicks in it can often be near-instantaneous and you’ll need to support the back of their neck well. Once your child is asleep you will need to leave the room quickly while the team get on with the important job of preparing your child. During Surgery Normal activities may seem strange when your child is in surgery. You may find that there is a hospital chapel nearby – a quiet room where you can gather your thoughts and focus on your child. You may also want to reconnect with your other child/children and prepare things for the whole family in the time available. There is normally a waiting room for parents next to intensive care – the surgeon will probably come by to let you know how things went and you’ll then have to wait a little longer while they prepare your child before your child’s nurse invites you in to see them. Intensive Care You may want to pack a bag just for intensive care with a set of pyjamas and a cuddly toy your child might want close by. You will need to remove your outdoor clothing (coats etc), turn off your mobile phone before entering and wash your hands before and after every contact. The beeping of machines may be very unnerving to start with and the room will be quite dimly lit. It may seem at first like the nurses are ignoring the alarms! They aren’t – they know when to act and when to worry. Sometimes the machine will beep due to simple things like your child moving or a lead coming loose and the nurses will attend to this appropriately. You will soon learn not to jump at every sound. Your child will probably be on a ventilator and still asleep when you see them. When they do stir and attempt to swallow you may find the nurses will opt to remove the ventilator – when removing the tube they will also suction the throat. Your child’s first words may be to do with feeling thirsty and their voice may be very faint/hoarse.

It is possible your child will be fluid-restricted and the lack of fluids will be difficult for them when they feel so thirsty.

It will be difficult to get really close to your child – the best you may be able to do, but which might bring your child comfort, is to lean over and be forehead-to-forehead with them. Have some healthy snacks ready (something soft and easy to swallow) for when they ask for food but be prepared that the first thing they eat may be vomited afterwards. The removal of chest drains, wires, life lines, sticky plasters and bandages may be painful and upsetting for your child – it’s all a necessary part of the process...be present and comforting in every way you can. On the Ward The level of attention on the ward may feel very different to intensive care, and can even come as a shock. Make sure you know who is in charge of your child’s care and explain anything you feel is important for them to know. The ward will probably supply bottles of sterilised water and straws (or you can take your own) so you can track fluid intake and your child can drink easily even in a reclined position. In fact, this is often asked of you and you may find it a useful task to focus on. The ward will be brighter and noisier than your child’s home environment. You may find their sleep pattern disturbed from the anaesthesia and from the level of activity on the ward. Wards are usually comprised of isolation rooms and larger rooms with bays for several children. You will have a curtain for privacy although it may be interesting and even helpful for your child to see other children close by. Your child will also take their first post-operative steps while on the ward, be sure to hold their hand and then closely spot them as they will be wobbly. Emotions No matter how resilient and easy going your child might be they will have gone through a physical trauma. This will manifest in different ways – you may find that your child is angry and frustrated. They will have had to allow all sorts of interventions and discomfort in your presence but without you preventing these from happening. There may be feelings of blame towards you and feelings of powerlessness. Don’t take these expressions personally – they are a healthy processing of your child’s reality and will be transient if given the space for accepted expression. Be close to your child, let them know you are there for them, hold a loving space for them even in their rage.

Stay close even if they reject your physical comfort and remain accepting and loving for as long as it takes – your child wants you, deeply, but their emotions will be powerful and confusing for them.

For a short time you may want to stretch some normal boundaries to accommodate such an exceptional situation. It’s not always easy to find within yourself the ability to be truly comfortable with what’s going on for your child – remember the gift of emotional maturity that you possess and have confidence you can meet these strong feelings. Once you can and you can accept them fully your child will have a great foundation for moving through their emotional gears. When a child believes their emotions are taken seriously and are legitimate they are much better equipped for learning how to handle them. The role-play and story-telling may also pick up on returning home as your child (and their siblings) relive and process the experience...through this you will be able to tune in to what they have found uncomfortable, surprising or interesting. Coming Home You may expect to be overwhelmed with relief and euphoria – this may happen, it may not – be prepared for any feelings, even if they don’t match those which other people might expect of you or you of yourself. Your child might be more active than feels reassuring! You may want to remove items which present inviting but inappropriate play such as indoor ride-on toys. You may also want to prepare some more sedentary games and have art or craft projects you can work on together.

There will also be a temptation to allow visitors early on, but rest and reduced exposure to others will have to remain a priority while your child rebuilds their immunity and their scar heals.

Be diligent with caring for the scar – normally you will be asked to keep it totally dry while it heals which can take 2-3 weeks. The scar may have been unbandaged within 24 hours of surgery so clean clothing on a daily basis will be important. Focus too on nutrition and nourishing the whole family with healthy food. Family Recovery The weeks and months after surgery will continue to be a time when your child and their siblings process the experience through story-telling, role-play and drawing. Your child may ask you to tell the story of everything that happened, especially the part when they were least aware of what was happening to help them fill in any gaps.

The re-telling can also be very healing for the adult as they re-tell and meet the feelings the story brings up.

While those around you see a physically recovered child and will share their relief with you, remember that the experience may have exhausted you in a way you’re not fully aware of. Take this time to be gentle with yourself and what you expect to be able to achieve on a daily basis. Aim for nurturing and nourishing support, share all your feelings and needs with your partner if you can (or find someone who will listen empathetically) and don’t be surprised if the experience leads to some choppy waters as everyone recalibrates.