Louise’s story

I believe that as a child with glaucoma, you really do just take it all in your stride as you don’t know any different.

When I was a baby, my parents noticed that my left eye was particularly watery, and I would cover my left eye and shade it from the sun whenever we went outside. Initially, my parents were told it was a blocked tear duct and would resolve itself, but they knew that something did not seem right. Thankfully, they took me to see a different GP who had seen one case of congenital glaucoma before and recognised the signs. I was officially diagnosed with congenital glaucoma in my left eye at the age of six months.

There was no history of glaucoma in my family, and my diagnosis was a complete shock to my parents. It is terrifying for any new parent to be advised that their baby has a serious eye condition. I had a goniotomy at the age of six months and my pressure raised significantly at the age of six years old, so I then had a trabeculectomy. My pressure raised again aged 22 when I initially had a needling process to remove the scar tissue, but this failed, and I had a new tube fitted. Within the past couple of years, my pressures have been a little up and down. I have undergone two more needling procedures and have tried various drops.

I am grateful for the help and support we received at Moorfields Eye Hospital. Growing up with the disease did not affect my life in a major way. Attending hospital appointments and having examinations was just the norm and it did not stop me from doing anything that my friends were doing. I feel very lucky that my pressures were stable for many years.

Glaucoma has not held me back in life. I drive, I have a career and I am now married with two young children. I believe that as a child with glaucoma, you really do just take it all in your stride as you don’t know any different, especially if you were diagnosed at birth. For parents and loved ones, it can be hard. I am sure my parents went through that helpless stage where all you can do is put your trust in the doctors and let your child grow and learn.

My son, Daniel, was diagnosed with glaucoma in both eyes at his 12-weeks check-up. It came as a big shock, and I was absolutely devastated. Daniel’s older sibling has not inherited the disease, but thankfully Daniel receives fantastic care at the RVI in Newcastle. He is now five and is such a character. Daniel has undergone major surgery twice, at 14 weeks old and again at 18 months, along with other trips to theatre for pressure checks. I think it’s important people understand what these glaucoma warriors go through. He currently has drops twice a week to help strengthen his weaker eye.

He started school in September 2023, but we’ve found that while he loves being outside, he struggles with the brightness, and mornings, especially, can be quite tough. His photophobia (fear of light) is a difficult issue that we have to deal with. There is always that thought in the back of my mind that we don’t know what is around the corner, but we take everything as it comes. He has undergone several surgeries already, and I am aware that there will be many challenges for him to face in the future. People believe that glaucoma only impacts people as they get older, which is not the case. More awareness around congenital glaucoma is important so that parents are aware of the signs.

I have always been aware of Glaucoma UK and the help the charity offers. Since Daniel’s diagnosis, I have done a lot more research and become more interested in getting as much information and knowledge as possible. Knowing that you are not the only person and/or only parent going through this, is a big help for me.

---