Empowering Parents: Preparing for the Fontan Surgery

AUDIO: Narrating this post in my voice.

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I was five months postpartum with our younger daughter when we had to take our older one for her Fontan surgery. The tasks and events related to the preparation served as a good distraction, but the dread of her third open-heart surgery lingered in the back of my mind the entire time.

Putting Thoughts in Order

I found myself overwhelmed with too many thoughts and needed to offload some of them. While it was hard to let go of my fears and worries, I started writing down a packing list, a to-do list, feeding charts, and the baby's schedule. I stuck post-its on cabinet doors marking where everything was in the kitchen, wrote a short and simplified instructions manual for the laundry and dishwasher, and created a suggested menu for the week.

Remembering all this now, I smile. It's a testament to my husband's unwavering support and bottomless understanding. He never took any of it as an insult. It was more about my need to do it than him needing any of it. It was my way of controlling what I could as a coping mechanism for everything out of my hands - like the outcome of our daughter's third open-heart surgery. A home under control gave me peace and the mental and emotional space to focus solely on what was happening at the hospital.

Writing helped. It was a relief to have fewer things to remember. The constant pressure of remembering everything I must not forget became exhausting as new ideas of what else needed to be done poured in over days and weeks.

My post-traumatic stress disorder (PTSD) was on fire. I thought of how she would be cut again, scarred, drugged; then there would be drug withdrawal again and all its symptoms. She was bigger, more aware. How would it be this time? How would she handle it? What would her trauma look like? How to be brave for her? I had a million questions. On top of those, I had a million more practical ones because we had changed the cardiologist, the hospital, and the country in between. We had other procedures here, sure, but not open-heart surgery. We were particularly worried about the transition from the all-day presence with the child in the Intensive Care Unit (ICU) we had in Bratislava, Slovakia, to the limited visiting hours implemented in Leuven, Belgium. I remember wondering if there could be any chance of them making an exception. But why would they?

I made a separate folder on my phone's Notes app for all the questions. I did not ask them all in the end, but having them written down helped me stop thinking about them. Knowing that when the time came, whatever needed to be asked was on my phone.

Having prepared and written all that, there was only one thing left to remember: don't forget the charger!

Organizing Home Life

Living away from family and the village to help, we flew in my mother-in-law. We devised a plan based on a divide-and-conquer strategy: I would focus on Emanuela at the hospital, my mother-in-law would care for our newborn, and my husband would juggle work, hospital visits, and evening duties with the little one.

We also created a chain of updates for other family members and friends. Based on previous hospital experiences, I knew it would be overwhelming for me to write the same messages to everyone individually.

So, first, I would send a text to my sister. Something like: "We are all prepped and ready for the OR. They should come and take us down any minute now." She would forward the text to my mom.

I would follow up a bit later: "Emanuela is in the OR. She's asleep. The surgery has just started, and I am back in the room. We're waiting now..."

My mom would inform aunts and others who joined the family chat group. Until the end: "The surgery is over. I will update you as soon as I know more."

While I still had a lot of incoming messages of encouragement, for which I am eternally grateful, I replied to those on my terms. For broader support, I shared updates on Instagram, connecting with those who understood our journey most.

Self-care for Parents

Although it hurt how much I missed the baby, our system worked. We exchanged pictures and video messages, and they came as soon as Emanuela was allowed visitors. Spending a few moments with the whole family at the hospital's rooftop playground recharged me.

You do not need to have all the answers or to be with your child every second of every day. Give yourself a break! For your own mental health, it is essential to schedule time away from the responsibilities of parenting and caregiving. Make plans for a friend, family member, or health care provider to spend time with your child while you read a book, go shopping, dine out, nap… anything that is truly relaxing.
Mended Little Hearts Guide

While I acknowledge that self-care for parents is incredibly important, in practice, however, it was very challenging for us. The limited visiting hours at the ICU felt like torture. Once Emanuela moved to the ward, I stayed by her side constantly to make up for the ICU trauma.

I tried to take care of myself with the little things I had pre-packed. For example, I loved applying sunscreen, even in winter. The smell reminded me of the sea and carefree times with the kids on the beach. I wrote about tips and tricks for mothers and their self-care in one of my previous blog posts (read it here). Like bringing my coffee mug to the hospital, so the morning ritual gave me a semblance of normalcy.

Only now, however, as Emanuela is six and life has medically slowed down, can I focus on my mental health in a deeper and more meaningful way.