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

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.

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

"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

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

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

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

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.

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

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

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,

"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

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

For a parent bringing the child for a procedure to the overwhelming Cardiac Catheterisation Laboratory (Cath Lab) does not necessarily make any difference with bringing the child to the operating theatre. The process is the same - putting the scared child on the table, showering him or her with kisses,

Although resilience and high quality of life are demonstrated by many individuals with congenital heart disease, a range of significant psychological challenges exists across the life span for this growing patient population. Psychiatric disorders represent the most common comorbidity among people with congenital heart disease. The American Heart Association scientific

(taken from Single Ventricle Heart Defects | Children's Hospital of Philadelphia) The heart typically has four chambers. The upper chambers, called atria, receive blood flowing into the heart. The lower chambers, called ventricles, pump blood out of the heart. 💡A child with a single ventricle defect is born with

(taken from What are Congenital Heart Defects? | CDC) Congenital heart defects (CHDs) are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can