My Life

Birth

I’m Nebiyat Tesfaye, born on March 19, 1993. I came into this world with spina bifida, a condition that required surgery right after birth. It took three attempts to successfully operate on me, and after 20 days in the hospital, I finally went home.

Growing up

I have two sisters and two brothers, and we are a very close-knit family. As I got older, my family noticed that my right foot still felt the effects of the surgeries I had as a baby. I had to go for more check-ups at the hospital. Thankfully, my complications weren’t severe, so I started going to school. As I continued growing, my physiotherapists suggested lots of exercises to strengthen and stretch my foot. I became more active and enjoyed playing sports, especially football and martial arts, which I studied for over two years.

I had a couple more foot surgeries with different methods, but they didn’t help much. Around grade nine I faced more complications, and the doctors said I needed immediate surgery to fix my foot. The worst part was being on crutches for six weeks during recovery. I felt sad, thinking I’d have to stop going to class and my life would fall apart. It was a tough time, but my strong family, friends, teachers, and doctors were my support system. They helped me become resilient. My classmates even prayed for me on the day of my surgery, and teachers came to my home to give me lessons because I couldn’t go to class for a year. That time turned out to be when I improved in my studies compared to many of my classmates.

The most recent surgery was in September 2022.

Medical Pathway:

During this time, I had to go to the hospital a lot because of my own health needs. Spending so much time in hospitals made me interested in studying medicine to help others. My community took good care of me, and that’s why I decided to join medical school.

Training and Professional Career

I started my clinical attachment at Zewditu Memorial, where I saw many kids facing similar and often worse problems than mine. Before that, I used to think my condition was rare in Ethiopia. Seeing all these children made me feel like I needed to do more to help them and their families. After I finished my studies, I was assigned to a rural hospital more than 100km away from Addis, and later I transferred to St Peter’s Specialized Hospital in Addis Ababa. Working there, I discovered it was also a place helping kids with spina bifida. Witnessing the struggles of these kids and families made me realize that I want to help and be a voice for them.

SBH kids and programs

I talked to the people in charge at St. Peters Hospital about how to improve the aftercare program for spina bifida kids. The hospital management supported me, and I became a case coordinator for SBH care. I wanted it to be one of the best places for these kids. This is when I learned about ReachAnother Foundation. I emailed Patricia and Dick and they called me directly. We talked for over an hour and from that day on, I became a part of the ReachAnother family. I learned a lot about ReachAnother’s vision, methods and programs, and Patricia and Dick mentored and coached me.

Around this time, I was also selected to join the Leadership in Public Health (LIPH) program. Dr. Meseret Zalalaem, the Director of Maternal, Child, and Nutrition at the Ethiopian Ministry of Health, provided me with invaluable mentoring. I believe this opportunity is helping me do more, especially in the public health side of caring for SBH.

Currently, I am the Technical Director for ReachAnother Foundation, which allows me to collaborate with eight hospitals around Ethiopia to develop Centers of Excellence in pediatric neurosurgery and make sure that kids can get the best care possible.

My work focuses on prevention, advocacy, treatment, aftercare and creating awareness in the community to reduce the risk factors for spinal bifida and hydrocephalus.

I remember the challenges my family and I faced, and I’m hopeful for a future where every mother can have a healthy baby, and every family can enjoy a peaceful and happy life.