Lessons Learned

BACK TO SCHOOL: Attention, Distraction, and everything in between

Higher risks of ADHD, learning difficulties, and anxiety are real for kids with CHD. But research - and our lived experience - show that with the right support, they can thrive.

Expert Answers

BACK TO SCHOOL - with Cath Kitchen: Parenting, Partnership, and Medical Needs in the Classroom

Every September I write a ‘Letter to the Teachers’ about my daughter’s single ventricle heart. This year, I turned to expert Cath Kitchen to explore how trust, courage, and partnership help children with medical needs thrive in school.

Mom's Diary

Happy Heartiversary, Kiddo!

Seven years ago, my baby's heart was untouched, her skin scar-free. Then came the day that changed everything. A fight for life, a battle she never chose. Every year, I wonder how to feel about it. Joy? Grief? This is the story of her second first birthday.

Lessons Learned

BASAL STIMULATION - A Parent's Role in Care

Basal stimulation is a simple yet powerful way to support critically ill children. Through my experience with my daughter, I share how small actions can make a big difference in a child's healing, as well as the well-being of the family, and why parental involvement is essential.

Mom's Diary

Celebrating Another Year: A Day for Gratitude

Emanuela’s birthdays are more than just milestones; they honor her resilience and our journey as a family. Despite lingering fears, hope and gratitude shine brightly as our baby girl blows out seven candles this year, a testament to her strength and life itself.

Expert Answers

WHY MENTAL HEALTH MATTERS - with Prof. Edward Callus, CHD Clinical Psychologist

Hospitalizations and medical interventions leave lasting marks on children with CHD, far beyond physical scars. This post explores the importance of mental health support, resilience, and family involvement in shaping a better quality of life for our young warriors.

Mom's Diary

Hospital Diaries: Cardiac Catheterisation

Emanuela's latest planned procedure - cardiac catheterisation - was filled with emotional challenges. It made me realize how right Viktor E. Frankl, author of Man's Search For Meaning, was in seeing humor as a lifeline to both sanity and survival.

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

Preparing for the Fontan Surgery: What to Do and What to Ask

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

Telling Your Child about Fontan Surgery: A Mother's Guide

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