My baby has been diagnosed with alopecia

My daughter Bellania, who is three years old, was born with 3–5 cm of hair, and it grew incredibly fast. She has now had alopecia for two years. It all started around the time of her one-year vaccination, but the autoimmune condition has always been in her genes. From birth, she has been a sensitive child, and every time she received a childhood vaccine, she reacted a little differently, some might say. We didn’t know why Bellania began losing her hair, so we didn’t think much of it at first. We cut off the remaining hair since most of it had already fallen out on the top of her head. Within just a week, her scalp felt like leather.

As parents, it was strange to experience our little daughter losing her hair. We became a bit worried and reported it as a possible side effect of the vaccine. Her hair falls out when changes happen in our lives, if too much is going on, or if she becomes ill – this still applies today, just not to the same extent. Bellania’s second period of hair loss accelerated when I returned to my studies after maternity leave. Bellania reacted by losing her eyelashes, eyebrows, and the rest of her body hair. It only took about a month before all her hair was gone.

At that point, we decided to see our doctor, who quickly referred us to the pediatric department at the hospital. We were assigned a medical student who was very skilled and, to our advantage, went against her supervisor and referred us to OUH. There, we spoke with a doctor who diagnosed Bellania with alopecia areata totalis, but we were also told that nothing could be done because she was so young. We were heartbroken, but we hid it. We had to be the same parents to her as we had always been. We had to learn to live with it, because this is how it may be for the rest of her life.

She can regain all her hair and lose it again at any time. We visited OUH three times over the course of a year, and each time we learned more and gained valuable knowledge. Thankfully, we were also praised for the way we handled it. When Bellania was 18 months old, she started daycare. During this period, she lost her hair for the third time. On several occasions, Bellania had soft downy hair on her head, which she also lost. Her skin would become like leather again and again. After this episode, it took about a year before her hair returned – she regained both her eyebrows and eyelashes with full color.

As a mother of a child with alopecia

It was a very sensitive subject. She almost felt like a stranger when I looked at her, yet I knew she was mine – I could feel her; I knew her. Sometimes I could close my eyes and see Bellania with hair, and when I opened them again, reality was different.

She is my child – my beloved little girl – simply with a new appearance that I had to get used to, which took a long time for both of us as parents. The hardest part was speaking as openly and naturally about the hair loss as we have always tried to do in public. We haven’t talked much about it at home because it hurt us too deeply.

“Why react like that when she is healthy?”

Yes, it’s hard to say, but no one understands what we as parents are going through. I lacked a forum where I could speak with others in the same situation. It was impossible to find with such a young child. That’s why I created the Instagram profile @alopeciababy, where I began documenting our journey with alopecia. I receive many private messages from followers around the world. They ask me for advice about everything related to our daughter’s alopecia, as they typically have children of the same age with the diagnosis.

“How does Bellania herself react?”

I’m often asked that. We have made it as normal as possible for Bellania. She knows what to answer when people ask, and she styles her own hair in the morning. In short, she is currently enjoying having her hair back. She is aware that she had hair as a baby and was completely bald in her second year of life. She is little and lives in the moment. She is happy and an absolutely wonderful little individual. She knows what is happening, she knows when she is losing her hair, and most importantly, she knows that she is beautiful and lovable no matter what.

- Louise, Bellania’s mother