Many families contact Little Hearts Matter for advice about how to prepare their children for the later stages of surgery or for a hospital admission for a cardiac catheter. When offering any suggestions it is important to remember that every child copes with hospital admission differently, as do their families: some will enter the whole experience positively, understanding that surgery may not be nice but that they will be able to do more once they have recovered.
Others will be anxious about admission, the environment, medical tests and machines. There is no doubt that some preparation before admission helps most children gain a sense of control through understanding.
This information has been designed to help parents to prepare their children through the use of books, toys and play activities. It also includes some practical tips which other parents have found useful in the hospital environment.
- Preparing yourself
- Preparing your child
- Preparing brothers and sisters
- Preparing other family members
- The day of admission
- The day of surgery
- Planning for going home from the hospital
- Toys which may help
- Books you may find helpful
- Further information
As parents, one of the most important preparations for admission is for you to understand as much as possible about the planned catheter or surgery. If you are confused or lack information, it is difficult to confidently prepare your child. If you feel that you need to know more, contact your specialist nurse/cardiac liaison sister who will help you find answers to your questions. For more complex procedures, try to understand what possible complications there may be, and whether there is any likelihood of further trips to theatres after the initial surgery. If your child is being admitted for the Fontan operation contact the LHM office or download The Fontan booklet.
Some hospitals offer pre-admission preparation, perhaps with a specific pre-admission clinic, or a chance to meet one of the surgeons who may be able to give you further information about the planned operation plus an opportunity to visit specific areas of the hospital again. You may feel that you don’t need to see the ward, theatres or the intensive care unit yourself but remember that your child may have been a baby at their last admission so a visit may well allay the fears conjured up by their imagination and the views of hospital portrayed on television.
Talk to other parents about the exact procedure your child is due to have, and try to find out how their child responded to the procedure at this particular age. For example, newborn babies need much less from their parents when they are in intensive care compared to a four or five year old who has just had their Fontan, who may need a parent to be there most of the time.
Obviously every child is different, but talking to other parents can be useful to help you anticipate when might be the more demanding times for you in terms of supporting your child. Facebook messaging or linking through the Little Hearts Matter support line can be a great way to link with other families.
It is important to plan your time away from work. Make an appointment to see your boss to explain what is planned and give them an idea of how much time your might need away from work. Not many people really understand what it is like to have a child who needs open heart surgery so take in any pictures of operations that may have happened before or if your child is going in for the Fontan procedure take in the Fontan booklet. Some companies will let you work a few more hours in the months leading up to the surgery so that you can have more time off later. It might also be helpful to discuss the admission with your GP.
What you may be unprepared for is how odd you may feel after your child’s surgery – you may need to plan not just for helping your child through the post-operative period, but also for what you may feel like and how to cushion it. You’ll have prepared for the hospital stay, but may not have given a thought to beyond it – you may have invested a great deal of emotional energy in just getting through itand staying strong for the sake of your child, which is completely understandable. But be prepared that once it’s over, rather than the sense of relief you expect, you may have a sense of let-down and depression – there can be a post-traumatic reaction to this kind of stress. Be gentle with yourself – and when planning for the operation, if possible, plan also for some ‘recovery time’ – perhaps a holiday, or just some support time from family and friends.
Preparing your child
Of course everyone, especially your child, will be nervous about having an operation. The key to preparing them, and the whole family, is to do it gradually, incorporating hospital play into every day. Reading hospital stories at bedtime, buying or borrowing Playmobil or Lego hospital sets or using other hospital toys help to give your child a chance to explore hospital in a non-threatening way. It is important to include brothers and sisters so that everyone has a chance to take part. See the list of of helpful toys and books at the end of this information.
Throughout the games and conversations it is essential to be honest, but not scary, with your child about their admission. Answer all questions as openly as you can, just like you would do with questions about every other aspect of their life.
If your child is showing an increasing fear of the medical tests done in outpatients or during a short admission it is important to talk to the specialist nurse about your concerns. They will refer you to the play specialist team or the cardiac psychologist who will organise some special play sessions to help your child express their fears and find ways to cope with going into the hospital.
Arlo became especially frightened and uncooperative during hospital appointments when he was two. We were increasingly concerned and we contacted our cardiac liaison nurse. A play specialist at our local hospital worked with Arlo on several occasions over the next eighteen months to resolve his fears. It made a big difference and we were very glad we had asked for help.
Parents often ask when would be the best time to tell their child about an upcoming admission to hospital. This is very individual and often depends on how the parents can cope with the child knowing as well as the child’s fears. Telling the children weeks ahead can often lead to great problems of extended anticipation, but letting them know a few days before you go in that the doctors are going to try to make their hearts work better helps the child trust everyone. Some organisations recommend telling a child aged between two and seven the number of days ahead of their admission which corresponds to their age. Older children are likely to be involved in earlier discussions so should be told further in advance.
All children should be given an opportunity to ask questions about what the doctors are going to do.
When Little Hearts Matter asked some children aged between five and ten what they would like their mum and dad to tell them, these are some of the answers they gave:
“The truth about the injection”. “Will the operation hurt?”. “What am I going to have done?”. “You will meet some children in the playroom and on the ward. You will have a heart operation”.“I want to know everything”.
It can be helpful to warn your child that they may have different food after the operation and that the amount that they can drink will be less than normal for a few days. The children can learn to measure out drinks and play a little with drinking smaller amounts. Find out if the hospital team will want your child to be on a low fat diet after the operation. If they do it is a good idea to pack some diet friendly snacks ready for when your child can eat something. For more information see the LHM MCT Diet booklet.
Once your child knows about the admission, include them and their brothers and sisters in the planning. Encourage them to decide what toys to take with them. Pack a few boxes with favourite games and ask the siblings to bring the boxes in one at a time to help vary the toys during a long admission. Pack a little rucksack or bag that your child can carry that includes favourite comfort toys, DVDs, blankets and books. This all helps the child to feel part of the preparation and to feel secure in the different surroundings in the ward. Make sure that your child knows if you are able to stay with them in the ward, and if not, when to expect to see you.
It is also nice to plan something that all the family can do when the admission is over – a family trip or holiday, a party or a visit to a friend’s. Don’t set dates and don’t make promises you may not be able to keep, but talk about the event as a positive once your child’s heart is better. You might also plan to do something nice the day before the admission, such as have a favourite meal, go on a day out or meet with friends.
No one can take away all the worry of a hospital admission but some of the ideas included here may give you some new ways to help reduce the stress.
Remember to call the hospital team or Little Hearts Matter if you would like to talk through any of your worries or fears.
Preparing brothers and sisters
Siblings should also be included in the preparation. They need to know about the plans for their brother and sister who is going into hospital, and also about the arrangements in place for them – who will look after them, where will they stay, when can they visit the hospital, when will they see you, etc?
Ask hospital staff for help with the sibling(s) if necessary – they may benefit from their own play therapy sessions, or might simply like the opportunity to ask staff questions about what is happening to their brother or sister.
Make sure you explain to the sibling’s school what is happening, and ask for their support and understanding. The sibling may need some extra attention at school, or help to catch up with missed work.
During the hospital stay, see as much of the sibling as is possible. Children’s hospitals and paediatric units are more than happy for brothers and sisters to visit once their patient is beginning to recover from the operation. They know that children get better if their family is around them. Make sure that you tell them what to expect when they come to the hospital. Send a picture to them of their brother or sister in their hospital bed, get them to send text messages that you can read out. When they visit encourage them to bring pictures for you and for their brother and sister. Maintain usual rules and limits as much as you can, e.g. bedtime, behaviour.
The charity Sibs has a section to help with preparation for hospital within the ‘parents’ part of their website, under ‘Helping siblings with emergencies and hospital stays‘.
Preparing other family members
Grandparents, aunts, uncles and friends will all want to know what surgery has been planned. It can be really difficult to have to repeat the plan a number of times so why not invite key family and friends round for a drink and explain it to everyone at the same time.
It can be really helpful to give everyone a key job. Could they help out with looking after siblings, support you in hospital by visiting or offer transport to the hospital, cook meals or support by sending messages.
You might want a grandparent to stay with you in the hospital to share the bedside care as this will give you time to sleep and have a meal.
It can also be useful to set up a communication tree or contact list so that you do not have to tell everyone separately about each day. Some people create a blog and link all their friends to it. Some people inform one person of the day’s events and they then cascade the information to everyone else. Mobile phones, iPads and email have made communicating so much easier. It also helps you feel less alone at the hospital because they can chat with you.
We found we had an avalanche of volunteers desperate to do something for us, to support us in any way they could – help with the house, packing and preparing – whatever. So having a communications network was a nobrainer for me. My friends were keen on the idea, willingly organised themselves into contact groups and offered to help forward e-mails, and communicate the contents to others not on email.
The day of admission
Always check the admission letter for the time that you need to ring to confirm that there is a bed for your child’s admission.
Although the hospital will work as hard as they can to prevent a cancellation sometimes an emergency admission will mean that a bed is not available for the day your admission was planned.
It can be very upsetting to be told that the admission date has changed especially if you have taken time away from work and planned the care of other children. It is very important that you try and keep positive about the new date that surgery has been planned. Be as positive as you can with your child so that they keep confident about the next date. Do something nice with the free day you did not expect to have. Snuggle up on the sofa with a treat and watch a film, surprise your other children by collecting them from school.
Keep the bag packed so that everyone knows that surgery will still be happening.Ella’s operation has been cancelled twice, once because she was ill and then because there was a shortage of intensive care beds.
Ella was fine about the delay and we were able to have a more normal family Christmas so maybe it was a blessing in disguise.
The day of surgery
It is helpful to find out what time of day the surgery is planned for but always remember that operating lists can change especially if other operations take longer or if staff are waiting for a bed to become available on the intensive care unit.
Nil by mouth
On the day of the catheter or operation, you will be told when the latest times are that your child can eat and drink. It can be quite difficult to keep a toddler or young child occupied when they are not allowed to eat as they prepare to go to theatre. It can be useful to have a plan for these situations, especially as, during a long hospitalisation, this may happen more than once. Have a selection of favourite toys and DVDs available. Computer games also work well as they totally absorb the child for a short period of time. You might wish to check through some favourite books and DVDs beforehand to make sure they do not include any references to food, to avoid any unnecessary extra tantrums! It is probably best not to eat in front of your child during this time.
The trip to the operating theatre
One or both parents will be able to go to theatres with their child. They may be a bit sleepy if they have been given a pre-med – a medication that makes them drowsy and relaxed on the way to the operation.
Once the child is asleep parents will be taken back to the ward. The ward staff will let them know how long the operation will be expected to last and they will take a contact number and give out a ward contact number.
Although it is difficult for parents to leave the hospital it is a good idea to fill the time by having a walk, getting a good meal and if possible having a sleep. When your child returns to intensive care after the operation you will want to be there as much as possible, possibly all night so catching some sleep before they come back is a really good idea.
Hints and tips
Here are a few practical ideas parents have come up with which might make your stay a bit easier.
- Check about sleeping arrangements and whether any parent accommodation will be available before you go in.If you plan to stay on the ward with your child, you might find it helpful to bring your own pillow as they can be scarce!
- Find out about the current situation regarding car parking (this often changes over time) – it can be both difficult and expensive.
- Sometimes hospital and ward policies change over time about whether nappies are provided – check this before you pack. Other essentials are your child’s medication plus medical records (e.g. red book and any hospital records you have), nightwear, dressing gown and slippers, toiletries and clothes for daytime. Remember that it can be quite warm in hospitals.
- Don’t forget to name things, especially your child’s favourite cuddly toy and your own food and drinks.
- You may prefer to take your own tea, coffee, milk and cereal, so that you can be fairly self-sufficient on the ward and don’t have to leave your child too often.
- Don’t forget to take in books and magazines for yourself. Also take hand cream as the constant washing and use of sanitising gel can make your skin very dry and uncomfortable. Baby wipes can be useful for a quick freshen up either for your child or yourself.
- If possible, find friends and relatives who can come and visit, and bring supplies and treats for you, as well as for your child!
- Always carefully check the admission letter from the hospital, to see when and who you need to phone to check about the availability of beds, when you need to be there, what they advise you to take with you, what the hospital policy is on contact with infectious diseases, etc.
Planning for going home from the hospital
Your child will only be discharged from hospital when the medical staff believe they are ready to go home. Transport home will need to be planned especially if you have travelled to the hospital by train. Your child will be exhausted by even a short journey whilst they are still recovering from surgery. Talk through your travel needs with the nurse before discharge is planned so that they can organise when it would be best to leave the hospital. Remember that your child may still need some time to convalesce at home. You will be told about when they can go back to school or nursery if appropriate, and you will also be told about follow-up appointments. The nurses organising your discharge will explain about your child’s care, medications and who to contact if you have any worries.
It is very common for children to have changes in the way that they behave when they get home from the hospital, e.g. clingy or bad tempered, or possibly problems such as poor sleeping, nightmares or bed wetting. These can be a normal part of the process of getting better and getting over the experience of being in hospital. Children find it hard to tell people how they are feeling so they show you their frustrations and fears in other ways. Very often it is mum or dad or brothers and sisters who are on the receiving end of a temper outburst because the child will trust you to help them understand how they feel. They may also be anxious about going back to school, wondering who will look after them if they feel unwell, or being worried about their scar or about getting hurt in the playground.
If you are worried about these areas, talk to one of the healthcare professionals supporting your child, such as the cardiac specialist nurse, school nurse or health visitor.
Be reassured that, with support, your child will go back to behaving as they did before.
Toys which may help
Incorporating hospital play into your child’s everyday playtime is recommended as a way for them to have a better understanding of hospital, the equipment they will see and what it does. This will all help to make their forthcoming admission a more relaxing and positive experience. Ideas and guide prices are included in the toy list. The age ranges are those given by the manufacturers; of course all children vary in their abilities and interests.
The Children’s Heart Federation have dolls with scars called Molly’s dollies. Each doll has its own scar which can be wherever your child’s is. Both boy and girl dolls are available with a selection of eye and hair colours. The dolls are available by application form which can be downloaded from the CHF website. If your application is endorsed by your cardiac specialist nurse, the doll will be free of charge.
Contact your health visitor to find out if there is a toy library near you which is resourced through one of the Early Years support schemes.
Ellis enjoys using an old roll-on deodrant bottle as a scan probe as part of his toy medical bag.
Books you may find helpful
Reading hospital stories can be another helpful way to familiarise your child with some of the people they may meet and procedures which may happen in hospital. Please do be careful with our children about some books which suggest everything will be completely better after a short hospital admission – these stories still have a useful role, but often describe very simple more routine surgery, so need to be handled sensitively.
Our book list download lists specific heart stories and general hospital books, together with a suggested age range, comments and guide prices. Colouring books themed around the hospital can also be useful – contact your hospital play department or talk to your cardiac specialist nurse to see if your hospital can provide one.
Books available from the LHM library
Please contact the Little Hearts Matter office if you would like help to get hold of either ‘Rosie goes red, Violet goes blue’ or ‘Sammy’s Heart Operation’. We also have a number of copies of the Usborne First Experiences – ‘Going to the Hospital’ book and the ‘See Inside Your Body’ lift the flap book available for members to borrow.
Don’t forget that your own local library may be able to help source a book if it is one you think will be of particular interest to your child; they may also be able to help source out-of-print books.
If you would like further information on any aspect of preparing your child for a hospital admission, don’t hesitate to contact your cardiac specialist nurse or Little Hearts Matter. The LHM team can offer support from the office and can put you in touch with appropriate parent supporters. Putting a question on the LHM Facebook member group might bring some useful suggestions based on other families’ experiences.
Many hospitals have information available to help parents and carers prepare their child for an admission to hospital – sometimes it’s available via their website. Local groups are also a rich source of information and support before and during a hospital admission.
Some might have resources to look at with your child at home (e.g. Eddie ECHO’s Heartbeat video – found on the ECHO website (Evelina Children’s Heart Organisation), whilst others might have a support service such as hospital visiting. Contact your hospital to find out what local support services are available.
Royal College of Anaesthetists
Their ‘For Patients and Relatives’ section has a host of online resources, and a section specfically for children and parents which includes downloadable leaflets for children.
The CBeebies website has useful information within their ‘for grown ups’ section. It has tips on preparing a child for an operation, and includes a link to a series of resources called ‘My Story Online’ which you can use to create a timeline and as tools to discuss fears and anxieties.
Sibs is a charity which represents the needs of siblings of disabled people. Within their ‘parents’ section, they have a section called ‘Helping siblings with emergencies and hospital admissions’ – it is packed with practical advice and is well worth reading.
Updated: May 2017
Review due: May 2020