Inspiring Others

Meg Didier on Mental Health: The Trauma of Single Ventricle Heart

As heart parents, we often wonder how early trauma will manifest as our children grow. Through insights from single ventricle survivor Meg Didier, we can learn how deep those experiences run—and how essential it is to look beyond survival to their long-term mental health.

Expert Answers

CAN CHILDREN WITH CHD GET THEIR EARS PIERCED? - with Marc Gewillig, em. prof. dr.

Emanuela’s wish for earrings seemed innocent, but with her complex heart condition, the decision to pierce her ears carried risks. Was there a safe way to do it? Here's how we navigated conflicting medical advice.

Inspiring Others

Meg Didier: From Survival to Advocacy - A Pioneering Heart Journey

Meeting Meg was mind-blowing. Her story, her life, and she herself are truly inspiring. I am honored to feature her interview as the first in this new series - Inspiring Others.

Mom's Diary

Beyond Survival: Three Personal Life-Changing Experiences as a Heart-Warrior Parent

The birth of our daughter forever changed our lives. However, three specific experiences inspired my advocacy for our children, commitment to offering support, and drive to empower parents.

Lessons Learned

Empowering Parents: Preparing for the Fontan Surgery

As I put my thoughts in order, wrote the list of questions, and organized our home... There was only one thing left to remember.

Lessons Learned

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.

Mom's Diary

The Privilege and Pain of Knowing: Our Prenatal Diagnosis Story

Receiving a prenatal diagnosis of a child's heart defect is not guaranteed. That is not to say it's impossible. Here's our experience.

Lessons Learned

MOTHER'S HOSPITAL BAG: 5 often Overlooked self-care Essentials

When your child is awaiting surgery, or any procedure for that matter, everything else becomes irrelevant. While the entire focus of a hospitalization is on the child, it's easy to forget about yourself as a parent. I remember my hands bleeding from disinfectant. The hospital air made my

Lessons Learned

Living Fully: Quality of Life with a Single Ventricle Heart

"Do you get scared when you have to go to the hospital?" I casually asked our six-year-old, Emanuela, following a Pediatric Quality of Life (PedsQL) questionnaire. My interest was piqued after reading about it in a study* assessing the quality of life (QoL) among 12-year-olds with serious Congenital

Lessons Learned

After the Diagnosis: 5 Key Steps for Every Heart-Parent

When I heard the diagnosis for the first time, I felt lost. As I slowly began to comprehend the future we would face and mourned the life I had envisioned, I found myself with more questions than answers at every turn. Every search on Google needed to be taken with

Mom's Diary

Memories from the ICU: Emanuela's First Easter

Easter 2018 arrived just as we hit two and a half months in the hospital. It was April 1st. Long before that, I had crafted a plan that our baby girl would be home by Easter. Instead, we found ourselves in the Intensive Care Unit (ICU). She had been rushed

Lessons Learned

TACHYCARDIA - From Panic to Peace

Irregular heartbeat (arrhythmia) kept our baby girl on the edge of life and death after her first open-heart surgery. During those first few months of her life, tachycardia would tire her heart so badly that she would be rushed to the Intensive Care Unit (ICU) and put on a ventilator

Mom's Diary

Unexpected turns: from Heart Arrhythmias to Pacemaker Placement (and back again)

Our story about pacemaker placement and life with it is a brief one. Mostly because the memories of that time are somewhat hazy. I recall feeling lost and defeated. But also, because in the end, it was only a few weeks between the pacemaker saving her life and being switched

Mom's Diary

A Mother's Balance of Worries and Wisdom: navigating the world of SPORTS

The other day, Emanuela unexpectedly wrapped up her Little Gym class early. She stormed out, a bundle of emotions, buried her nose in my neck and vowed never (ever ever) to return to the gym because "everyone is just running all the time". It was futile to try

Lessons Learned

CHILD'S HOSPITAL STAY - 5 Comfort Essentials to Pack

The number of things to consider before a child's hospitalization can be overwhelming, and it's almost inevitable to overlook something. That's not a problem when there is a village to rely on; family members and friends that will bring anything at any time. But

Lessons Learned

RUNNY NOSE AND COUGH - ALL THE TIME - Five things that offer relief

Every winter brings the same story, beginning with the first rain and a temperature drop. Oh, and with kindergarten. Definitely with kindergarten. It's that time of the year when a sneeze propels me into a home-pharmacy-inventory frenzy. And I will not sit still if any essentials are missing.

Mom's Diary

Dear Diary... I'm back.

Last year was... wasted. My ideas, projects and to-do lists were mostly collecting dust. Since I did not accomplish nearly as much as I wanted and planned, I often grappled with guilt, feeling like the year slipped away. But... was it; did it really? In 2023, Emanuela turned 5. We

Mom's Diary

WHAT'S THE POINT - A mother's voice

After so many stories found and told as a journalist in the past decade (and more) of my life, I have never thought I will have the most important story to tell as a mother. We have been given this voice and I feel the need to use it. Thanks

Lessons Learned

BACK TO SCHOOL - A Letter to the Teachers

Our daughter was a bubble-wrap child. For years, we kept her away from shopping malls, crowded indoor play areas and other drooling, sneezing, virus-and-bacteria-spreading kids. You can imagine how our social life looked like. By the time she was three years old we started getting ready for both her third

Expert Answers

SWIMMING IS GREAT, BUT... - with MUDr. Martin Záhorec, PhD.

It's been a week since we came to our usual summer destination. True to her pattern of needing between five to seven days to adjust, our "blue kid" made peace with the Adriatic Sea being colder than her bath. Swimming is a great activity for Fontan

Mom's Diary

Dear Diary... is this PTSD?

I was told I am brave and that our story is inspiring so many times that it does not leave any room to think otherwise. Hence, I do not dare saying just how scared I can be and how dark my thoughts can go. By saying how anxious I can

Lessons Learned

Four things that make a difference (in the ICU)

The Intensive Care Unit (ICU) is a tough place to be. Your child is intubated. Sedated and otherwise heavily drugged. Scared. Most probably (very) angry at you. Some refuse to talk. Extubating is a milestone to celebrate, as well as the start of weaning off painkillers and other meds. But

Lessons Learned

The (im)possible - BECOMING PREGNANT WITH HALF A HEART

First time I Googled something like "pregnancy with a single ventricle heart" was around six years ago, when I found out our daughter would be born with half a heart. Would she ever be able to have children of her own? Preparing myself for what was to come,

Lessons Learned

Do your heart a favour - move!

"Exercise is the best you can do for her," was a simple answer from our daughter's cardiologist to all my questions. Can she hang from stuff? Can she be upside down? Can she go under the water while swimming? Can she swim? Can she jump? How

Lessons Learned

After the heart is fixed...

One of the first things I have learned at the beginning of this journey of ours, I remember, was that fixing a single ventricle heart is palliative. Palliative, I thought, as in sitting next to a terminally ill person, holding hands and waiting to die. But it turned out that