Alice's story

At our 20 week pregnancy scan we were told our daughter had a possible cataract in her right eye. We were prepared for this, as apparently it wasn't a "big deal" and would mean a brief surgery and all would be well.

Alice was 11 days late and after a tricky birth we were so excited to finally have her with us, only to find out she had no red light reflex in both of her eyes.  My midwife mentioned the words "blind" and "syndrome".  As first-time parents this sent our minds spinning!!

When Alice was 5 days old we were sent to a local eye specialist who quickly sent us to a larger hospital 4 hours away for an urgent appointment. We were to find out Alice had a cataract in both eyes and one eye was smaller than the other with a very small pupil.

Alice had the cataracts extracted at 4 weeks and 5 weeks old. Each time we had to travel away from home.

At 9 weeks old Alice was fitted with her first pair of contact lenses. She wears contact lenses all the time. Once a week we take them out, clean them and put them back in. This in itself has been a huge learning curve and is not our favourite time of the week. 😭 (So far we have only lost one and snapped one 🤞).

In the first 3 months of Alice's life we travelled almost weekly to appointments 4 hours away to see optometrists, ophthalmologist etc. 

Now, at 20 months old, Alice is doing amazingly well.  She has developed perfectly normally and is very smart!! We still have regular check-ups but most of them happen locally. Alice wears a patch for 1 hour a day to help strengthen her weaker eye.

We are incredibly blessed to be on this journey with her, as it has taught us patience and resilience. We are grateful for the technology available to us and the expertise of the professionals we have met. We are currently undergoing genetic testing to find out the possibility of future children having the same eye problems.