Why does my son have so many ear infections?

It’s hard to imagine that Alex has had his ears so damaged. As Alex was only a few weeks old, I felt that something was not right. He was grumpy, didn’t seem to want to be held like other babies and didn’t talk. ‘Don’t worry, boys will always be different from girls,’ I was told. I knew there was something wrong, but it wasn’t obvious.

The vicious cycle of ear infections began when he was seven months old. Alex was diagnosed with an ear infection by the GP and prescribed antibiotics. However, within a few weeks of finishing his antibiotics, he would get another ear infection. The cycle continued for months, and I questioned if it was normal. I was assured that this was normal and many children have ear issues but grow out of them. This is true. I had grommets and glue ears as a child. However, I had a gut feeling that there was more going on.

Alex was only 11 months old when I decided to stop. I was fortunate that my husband’s job provided private health insurance, so I scheduled an appointment with an ENT specialist. We were told to keep an eye on the situation and make a note of any infections. Then, we should return in two months. After a week, we went back to the doctor. He confirmed that Alex had adhesive ear and showed us the number of infections. He was so right!

The second consultant confirmed that Alex has a glued ear. He also noted a small patch near the eardrum that he wanted him to examine. Alex’s first audiology test revealed that our son had a very low hearing level due to a glued ear. Alex had his first surgery at 16 months. He also had grommets implanted. I cried. Any parent who has left their child with a surgeon knows the feelings of guilt and fear. The grommet surgery was a great success. Alex could hear for the very first time.

What about that small patch of skin? It was found to be congenital cholesteatomas. It turns out that they are an abnormal growth of the skin near the eardrum. In most cases, it’s caused by recurrent infections in the ear, but sometimes children are born with them (called congenital, like Alex). Even rarer is a hereditary cancer in both ears. Alex had ear issues that we thought he’d grow out of, but now he has bilateral congenital cholesteatomas.

We had no other option but to have Alex undergo surgery. If cholesteatomas continue to grow, they can cause the bones to erode. In severe cases, they can spread to the brain and cause meningitis or abscesses. Alex underwent two more surgeries to remove cholesteatomas and two additional ones to remove the packing. Alex was free of congenital cholesteatomas by the end of May 2018. We never imagined we would have to return, but this month (February 2020), he will be returning for more surgery. It’s a recurrent cancerous cholesteatoma this time, but we’ll talk about that in another blog.