Why I published a medical book for children

For as long as I can remember, I have been fascinated by the human body. When I was eight, I developed Bell’s palsy, a temporary paralysis that causes the facial muscles to weaken. It can be triggered by a viral infection, but the exact cause remains unknown. I vividly remember the doctor explaining this to my mother. As soon as we stepped out of his office, I asked her, what does he mean the cause is unknown? “There are still things we don’t know about the human body,” my mother said.

That moment changed everything for me. Realising that science still had unanswered questions was thrilling. Biology quickly became my favorite subject. In high school, I came across an article about stem cells. The idea of scientists resetting and bringing an adult cell (from the skin or blood) back into a stem cell state, capable of becoming any cell type in the body, motivated me to pursue a research career in biology.

I joined a stem cell lab where we investigated the possible mechanisms behind a rare congenital disease called Esophageal Atresia with Tracheoesophageal Fistula (EA/TEF). This condition affects 1 in 2,500 newborns worldwide each year, and the exact causes remain unknown.

EA/TEF babies are born with an esophagus that does not properly connect to the stomach and is abnormally connected to the trachea (windpipe). Affected newborns experience choking, coughing, respiratory distress, and cyanosis ( bluish skin due to lack of oxygen).

In common types, this condition can be surgically repaired, often within the first few days of life. While affected children may require frequent esophageal dilations or experience recurrent pneumonia, they generally go on to lead a good quality of life.

My PhD research focused on understanding the underlying mechanisms that lead to this rare malformation. To keep myself motivated and connected to the real-world impact of my work, my supervisor encouraged me to visit an EA/TEF clinic regularly. There, I had the opportunity to meet the children and their parents, forming meaningful connections and gaining a deeper understanding of why my work matters.After several visits and conversations with the children, I realized that many families have little knowledge about the malformation their children have.  

To raise awareness, I joined a Facebook group for the EA/TEF community and started publishing daily facts throughout January, which is EA/TEF Awareness Month. As the engagement with my posts increased, I gained a deeper understanding of the challenges faced by this community, and decided to write a children’s book about EA/TEF.

The idea felt like a natural extension of my research, but I didn’t know where to start.

I drafted unstructured thoughts, then I realized the best way to proceed was to talk directly with the affected families. Some parents were open to the idea. I remember visiting a teenager with EA/TEF; we sat down and spoke about her struggles and what she would want to see in a book.

I engaged and collaborated with a team of medical professionals involved in EA/TEF care in Sainte Justine Hospital, in Montreal. I had several meetings with a specialized EA/TEF pediatric nurse, a nutritionist, a gastroenterologist, a pulmonologist, and many others. While I was confident in the scientific aspects from my PhD research, their inputs properly addressed the clinical side of EA/TEF. Their inputs ensured that the book was not only engaging, but also accurate and representative of real clinical experiences.

A children’s book editor helped refine the language to make sure it was simple and accessible for kids. At the same time, I wanted to introduce real medical terms—so instead of saying ‘food tube’, I used esophagus, and instead of oversimplifying concepts, I made sure words like trachea and stenosis were included.

I worked closely with the editor to strike the right balance. The heart of this project was to empower children, so, when they visit the doctor’s office, they can fully understand what’s being discussed. It was a full-circle moment for me; remembering myself sitting in a doctor's office as a child, unable to grasp what was being said. I wanted children to feel informed, included, and confident in their own care.

The next step was finding an illustrator; someone who could bring the book to life visually. I worked closely with her to ensure the characters, anatomy, and organ functions were accurately represented.

Funding was the next big step. I shared the idea with the EA/TEF community, and their response was overwhelming. I launched a GoFundMe campaign, and  managed to raise enough money to complete the book.

After working with a graphic designer to combine the illustrations and text, the book was finally ready. I reached out to publishing houses, sent emails, and tried to leverage my connections, but due to the niche audience of the book, there was little interest in taking on the project. I knew I had to consider a different approach.

Then, a friend suggested using an online platform for self publishing. It turned out to be an easy and accessible way, and I didn’t even need to do much promotion. The community was already eager to have the book in their hands. Soon, I started receiving orders from all over the world.

Parents started sending me pictures of their children reading the book to their friends at school, sharing it during show-and-tell, reading it before bed, and even using it to explain EA/TEF to their family members. These children finally felt seen, represented, and understood—and they learned more about their condition than ever before.

Looking back, this book became more than just a project. For me, it was a mission to help people and improve lives with better communication. I have a dream of making this book accessible to all EA/TEF children and families around the world in English, Arabic and many other languages.

Sign-up to receive our e-alert update every two weeks to keep up with everything new on the portal.