Our daughter, Kate*, was 5 weeks old when I thought that something was not right with one of her eyes. I couldn’t put my finger on what it was, but one of her eyes didn’t track the same way as the other and appeared to be lazy. I booked a GP appointment the following day only to be told that everything was normal and it was just a developmental thing. I wasn’t convinced so continued to ask questions at her 6 week check with our paediatrician and child health nurse. Both gave me the same feedback as our GP – it was a developmental thing. In the coming weeks I saw another GP and two more child health nurses and kept getting told the same thing. I was beginning to feel like a hypochondriac, but I just knew that something wasn’t right.
Finally when Kate was 10 weeks old I went to my own GP and asked for a referral to an eye specialist, despite what she could or could not see. Thankfully she didn’t doubt me and sent a referral to the eye clinic. We were seen within the week by the eye clinic, and Kate was diagnosed with a cataract in her left eye. The doctor then tested both myself and my husband to determine if it was a congenital cataract or caused by something else. Upon this, we discovered that my husband has a mild cataract in both eyes, however they are not affecting his sight as they are off to the side. He also checked our older son, who got the all clear. Following this and some blood tests, Kate was diagnosed with a congenital cataract in her left eye. She was then referred to the professor at the clinic.
For the next 16 months or so we treated Kate’s eye with atropine drops every second day so she could see around the cataract and patched the right eye for one hour a day. Initially the patching went quite well, however as time went by she began to tolerate it less and less until she refused to wear it at all. At this point it became apparent that Kate’s cataract was growing rapidly and surgery needed to take place.
Last November, Kate (aged 19 months at the time) was referred to a specialist at the children’s hospital on the mainland, with surgery booked within ten days. At our pre-op appointment (the first time the operating specialist had seen Kate) the specialist was unsure as to whether the surgery would be able to go ahead. Kate’s cataract appeared to be quite dense, at the back of her eye and the specialist thought it may have been attached to nerves which would have made the surgery too risky and for little gain, however this couldn’t be confirmed until Kate was under a general anaesthetic. The following day Kate went into theatre, and here I must say that the anaesthesiologist who cared for Kate was amazing both for her and for me as her mum. Again the specialist told me that he would have a look at her eye, but thought there was a high chance that the surgery would not go ahead. We watched the clock as time ticked by – half an hour, an hour, an hour and a half and then finally the specialist reappeared with the fantastic news that the cataract had been removed and a lens inserted into Kate’s left eye. We were so grateful for this news. The specialist suspected that within 6-12 months Kate would have lost any clear vision she had within the eye as the cataract had just about covered the eye. He showed us pictures that showed the extent of the cataract which was pretty alarming.
Now just over two months post-surgery, Kate (now nearly 22 months) has recovered really well. We are working hard to retrain her brain to use her left eye by patching her right eye for 4-6 hours a day. She will happily wear a patch and go about her day – navigating playgrounds or the backyard, doing puzzles, drawing and painting and enjoying stories, etc. This in itself tells us that she is able to see out of her left eye. Before surgery we weren’t able to get her to wear a patch for one minute let alone 60 minutes, now she will wear a patch for hours at a time. We still have a lot of work ahead with patching, glasses in the future and eye turn correction, but we are committed to this journey and will do anything we can to make sure Kate has the best vision possible.
Perhaps one of the main lessons I have learnt from Kate’s diagnosis is to always trust my motherly instinct. Sometimes a mother does know best and should always persist or seek second opinions (or 5 in our case) if something does not appear or feel right.