Preparing my child for heart surgery

Yesterday we got the call that we’d been expecting and dreading. The date for Jessica’s next heart surgery. My world has shrunk to a few short weeks – a date in the calendar that I cannot see beyond. I know it has to happen. I know she needs this surgery, and that all being well, will have more energy as a result of it. Even knowing all this, as a parent, it is a scary prospect. For Jessica though, it is an adventure. It is a “sleepover” at the doctors.


She knows it is coming. She frequently asks how many sleeps there are to go. To her this is a positive step. And I am thankful for that. She does not need to worry about risks or what-ifs. Those worries are for us as parents to carry. She knows that she will feel poorly for a while after the surgery; that she will need a lot of time off school to recover. I have tried to be honest with her about that, without making it a frightening prospect for her.


This is Jessica’s first big surgery since she was a baby. This time she will be so much more aware of what is going on. All the tests and procedures, all the tubes and wires. Over the last couple of months, I have tried to prepare her for this and will continue to do so over the next three weeks. Here is how we have been preparing Jessica for heart surgery.


A drawing of Jessica on a theatre trolley getting ready to go down to theatre - "Preparing my child for heart surgery"


Writing a book about what to expect

Over the summer, I wrote and illustrated a book for Jessica all about her heart operation. This book is all about her. She loves the fact that the pictures in the book are clearly her and Sophie, and that her favourite dolly Kerry is nearly always with her. I have explained about how her heart affects her now and how the doctors are hoping to make her heart work better so that she has more energy to play with her sister. The story helps to give her an idea of what to expect – from having a look around the ward while waiting for a date, through to going in to hospital, having tests, being given medicine to make her sleepy and then waking up in intensive care with tubes and wires. I’ve tried to keep it simple and understandable for her.


A double page spread from my book preparing Jessica for her heart surgery. The pages show Jessica being shown around the ward and Jessica having an ECG


Jessica loves her book. So far this seems to have been the most helpful thing with preparing her for surgery.

[Update: September 2018 – My “Jessica/Jack has a heart operation” book is now available to help other heart children prepare for surgery. You can download a copy here.]


Using toys

We bought Jessica a Playmobil children’s hospital for her birthday. She loves small world play and has spent hours playing with this. There are various miniature items of equipment in the hospital that Jessica is familiar with and she loves playing that the Playmobil doctors are making the little children better.


Jessica playing with her Playmobil hospital


Jessica loves her Playmobil hospital so much that she asked to take it into hospital with her. It’s much too big for us to take so I made a “children’s hospital in a box” for her. This is basically a clip-lid container with pictures of the inside of a children’s ward stuck inside the box. The box is the perfect size for a few of her Playmobil hospital figures and furniture which can then be stored in the container when it’s not being used for small world play.


A clip-lock box with pictures of a children's hospital interior stuck to the inside to make a "children's hospital in a box"


We also have a toy doctor’s kit that Jessica has played with ever since she was a toddler. I love watching her and Sophie playing doctors and making each other better. A couple of the items in the kit are things that have been used on Jessica in the hospital, so this also helps her to become more familiar with them.



Practical ways of preparing

We’ve stocked up on button-up pyjamas (thanks to some lovely gifts from friends and family) and ordered a pair of wrap pyjamas for Jessica from Pyjama Fairies. Front-opening pyjamas are a must when trying to work around all the dressings, tubes and wires.


We’ll be encouraging Jessica to choose any toys or special blankets to take with her. I know that her favourite doll Kerry will be the first thing on the list! We also have a portable DVD player so she can watch her favourite programmes.



Preparing Sophie

Having the book about Jessica’s heart operation has also been useful for helping to prepare Sophie. She can see herself in the story too which helps her to feel included in this process. We have talked about her having a sleepover with her auntie and cousins for a little while which should be fun for her.



Hopefully all these things will help with preparing both our girls for Jessica’s heart surgery. I’m conscious of trying to keep the balance of being open and honest without making it a frightening prospect. I hope I’ve managed to get the balance right. If you do have any tips though on any other ways to help prepare Jessica for her heart surgery, then please do let me know!


Little Hearts Big Love

28 thoughts on “Preparing my child for heart surgery

    1. Thank you so much Sarah. I’m hoping that it will really help her get through it all x

  1. Making a book was such an amazing thing to do. What a clever idea!! And the playmonil set is also such a great way for Jessica to prepare. Regardless of prep it’s a big deal & a bit scary, I’d say especially for the parents. Sending love to you all & best wishes for a speedy recovery xx

    1. Thank you Becky. The book has been the biggest help for us – it’s also made explaining things to Jessica’s school friends and Girls’ Brigade friends a little easier too x

  2. I cannot imagine a better set of parents than you two when growing and loving any child let alone a child with extra needs. You have done absolutely everything possible to make this the best experience it could ever be, your girls are so so lucky to have been sent to you. Good luck to you all and will be waiting to see Jessica’s smiley face again on her road to recovery xxxxx

    1. Aww bless you Pippa, thank you for such a lovely comment. There are so many times that I feel that I could be a better parent to my girls but I think all mums feel like that and most of the time I do my best and that’s all anyone can do! xx

  3. Louise,

    It’s clear that you’re planning and preparing very thoroughly for Jessica’s operation. I had wondered whether you would need to get Sophie prepared — and of course you’re already doing that!
    On YouTube, you could look at “Melissa’s heart surgery” about an eight-year-old’s heart operation, and “Ava Goes to Surgery” which is simpler, but perhaps too sanitised.

    1. Thank you, will have a look at those videos and see if they would also be useful for the girls.

  4. It must be so difficult for you. This does look like a perfect way how to prepare her for the big surgery – and that book looks wonderful! Such a clever idea. Wishing you lots of love and strength for the coming months.

  5. Sending massive hugs!
    It sounds like you are preparing the girls so well. The book is a wonderful idea.
    I hope the surgery goes well and Jessica makes a speedy recovery x

  6. The book and the toy hospital sound like great ideas. Your daughter (and you!) must be so brave – wishing you guys all the best as you prepare for this surgery. #ablogginggoodtime

    1. Thank you so much. I’m not feeling especially brave at the moment but I’m doing my best at pretending to be!

  7. Wow, what an amazing thing to do Louise, writing that book much make the whole thing so much easier for Jessica. I’m thinking about you all.

    1. Thank you so much. It’s quite an anxious time but seeing Jessica taking it in her stride helps x

  8. I can not imagine how hard this is for you, this time waiting and even writing this post. You are truly amazing,a beautiful mother. I think writing the book and playing doctors is exactly the right thing to do and she sounds so comfortable so clearly you are doing the right thing. Sending love, prayers and positive vibes your way xx Thank you for linking up #ablogginggoodtime

    1. Thank you so much for your lovely comment. I’ve tried my best to prepare her as much as I can and hopefully it will help her get through it all x

  9. What a brilliant book! My daughter has had a couple of major operations but the one last year was the most difficult because, being 5yrs old, she was much more aware. I think role-play beforehand is super important – it allows them to explore it all in a safe environment. Favourite teddies and books are also essential so that they feel connected to home. And just the reassurance that you will be there too. I hope the operation is successful and that they manage to achieve what they’re setting out to do.

    And congratulations because someone loved this post so much, they added it to the BlogCrush linky! Feel free to collect your “I’ve been featured” blog badge 🙂 #blogcrush

    1. Thank you Lucy. It is harder when they are more aware of it all. Hope that your daughter coped well with it all and is doing well now. So lovely to be added to the #blogcrush linky, thank you 🙂

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