A Mother's Guide: Telling Your Child about Fontan Surgery
Deciding when, what, and how to tell our three-year-old about her upcoming surgery was a challenge. Here, I share the steps we took to prepare her.
We scheduled her third and final planned open-heart surgery (Fontan) for late summer of 2021. By then, she would be three and a half years old, just a month away from starting kindergarten. Considering the average post-Fontan recovery time, which is between one and two weeks, we added a buffer period. Our past experiences taught us to expect the unexpected. True to form, we came home on day 19, with two weeks left for her to regain enough strength to start her new social life, after years of more or less successfully shielding her from germs and viruses.
Katarina Stano
By the time of the surgery, we were well-versed in hospital life. She'd already undergone two open-heart surgeries, a jejunostomy placement and removal, malrotation of intestines and volvulus corrections, and a pacemaker placement surgery - all before her third birthday. But this time felt different. She would understand that something bad, painful, and serious was happening.
Although it was "just another open-heart surgery," it was not the same. She was older and more aware, and me... I was clueless about how to prepare her for it.
All paediatric hospitals employ child life specialists who are trained to explain medical procedures to children. These specialists often use dolls or books to prepare children for the hospital and post-surgery changes. They can arrange a pre-op tour, allowing children to see the hospital and ask questions.
(Sisters by Heart - Preparing Your Child for the Fontan)
Alex Tchouchev
During our daughter's surgeries in Slovakia and Belgium, we never heard of child life specialists nor had the opportunity to use any similar services. Mostly, it was up to us to figure things out. Apart from some very basic pointers from the cardiologist, I took a very journalistic approach to gathering information - researching from scratch. Here's what I came up with and what worked best for us.
Fun Before the Surgery
We spent the first half of the summer at the coast, enjoying family time, playing games, and soaking in the sun. Emanuela thrived with all the physical activities in the water, fresh air, and parental attention. I cannot scientifically prove it, but I like to think this helped her gather the strength to endure what was ahead.
That summer, her younger sister was also baptized, bringing many family members and friends together. None of this was planned because of the surgery, but it turned out to be perfect.
Engaging in fun activities and building memories made the time before the surgery a bit easier. Support and distraction helped shift the worries to the back of our minds, keeping Emanuela happily clueless until a few days before the surgery.
When, What, and How to Tell
The hardest part to figure out was deciding when to tell her about the surgery.
We recommend telling no more than one to three days prior to the procedure to give children time to ask questions and process the information, but not too much time to worry about it or to forget.
(Sisters by Heart - Preparing Your Child for the Fontan)
We were not aware of the recommendations at the time, so we chose to start a week before.
"Do you remember last time we were at the hospital, where you climbed the wall and we did puzzles in the playroom? We will have to go again soon. What do you think?" She was excited to go - to play! And we left it there. The next day, we repeated and upgraded the amount of information.
We introduced the idea gradually, and that worked well.
The next challenge was what to tell, how to prepare her, and how to explain it.
"Do not talk of cutting, knives, and needles!" was the pointer we got from the cardiologist. Apparently, it's not uncommon for parents to go into too many and too vivid details. Even though kids might listen and feel okay at home, with their abstract understanding of it, once at the hospital, it can end up in a lot of screaming and fighting off even the painless tests, we were told.
When talking about the hospital, try to avoid analogies and metaphors like “having a zipper” or “fixing your engine” as these can evoke confusing and scary imagery for young children. Using familiar terms like “boo-boo” or “owie” helps the child understand without letting the imagination run wild.
(Sisters by Heart - Preparing Your Child for the Fontan)
It's advisable to also avoid words like "sick" or "broken" and use words like "help" or "make stronger" instead. It's good to emphasize the positives, like all the things the child could do more of after the surgery - run, swim, etc. But also, that there would be lots of playtime in the hospital, more cartoons, more sweets, and more of everything a parent bribes the kid with to draw out a smile or two amidst the river of tears.
Surgical prep: hospital hustle and moments of fun. (August 2021)
Books like Franklin Goes to the Hospital helped me find child-friendly and age-appropriate language. When Franklin needs surgery to fix his cracked shell, he learns it's ok to be scared and still be brave. The book made the experience relatable and less frightening. When Emanuela had to have an x-ray and I had to hide behind the wall, out of her sight, was terrifying to her. But we made it with "Just like Franklin!" encouragements.
The book taught me how to be honest with her.
Honesty with the Child
"Yes, it will be hard. And yes, sometimes it will be boo-boo. But I will be with you. I will hold you and we will cuddle and it will pass." I kept reassuring her.
We explained everything: the two of us would get a room where we would play and eat and sleep together; I would wash her and put a funny little pajama on her, with an open back, where we would have to make sure to hide her tushy; a kind nurse will come and drive her through the hallways to a special room where she will get medicine to sleep; if she wanted, I could carry her if she wouldn't want to be driven; there will be a lot of people in robes and with hats and masks and that she shouldn't be afraid of them because that is just the way they are dressed and that I will be with her, holding her hand all the time and that she will see me next to her when she wakes up...
Despite our efforts, she struggled when we arrived at the operating theatre.
It was even harder to explain the ICU rules and visiting hours, and that "sometimes mummy and daddy might not be there because the doctors will not allow it." She simply did not accept that. As if it were her decision to make. And once we got there, it was hard, but with love and support, we made it through, hopefully, more bonded than traumatized.
The first day at home after open-heart surgery. Day 20 post-Fontan. (August 2021)
I wrote about the ICU experience here; click to read about what helped us.
Medical Disclaimer
This article is for informational or educational purposes only. It does not substitute professional medical advice, diagnosis or treatment. Always seek the advice of a physician or other qualified health provider.