Lil Z has the most stunning eyelashes you’ve ever seen. They are long and dark and perfectly curled. They are the eyelashes that cosmetic companies try to convince you their mascara will give you, the eyelashes that even supermodels hunger for…
Everyone comments on them. We’ve had crowds of nurses admiring them during trips to the Emergency Department. She is known for her beautiful eyelashes.
However, they’re only beautiful on top. The bottom eyelashes aren’t visible. This is because they curl up into Lil Z’s eyes. And this has become a problem.
A few weeks ago, Lil Z’s former nanny looked after her for a day. It was lovely to see that Lil Z remembered her and they had a great time together. However, one of the things that the nanny commented on was that Lil Z keeps her eyes closed or partly closed most of the time now, something she never used to do.
The comment made me look back at photos of Lil Z as a baby and I realised the nanny was right. As an infant she was wide-eyed, but in recent months it has been difficult to get her to open her eyes at all. She no longer wants to look around at the world, but instead wants to close her eyes and cuddle into whoever is holding her. Sweet, but certainly not good for her development.
Lil Z has suffered from trichiasis for a while now, but it has certainly become worse in recent months, to the extent that she now avoids opening her right eye. Trichiasis is when eyelashes grow inward into the eye. Most instances it is painful and can cause eye infections and poor vision. It’s not uncommon in infants and small children, but because their eyelashes are so soft and they are growing so quickly, it is rarely a serious problem and they generally grow out of it.
That is the response I got from several doctors when I raised the issue at various times over the past year. However, when I raised it during an appointment with her ophthalmologist shortly before Christmas, he took it seriously. Staining the surface of her eyes with dye showed that her ingrown eyelashes are actually causing damage. And Lil Z was referred to an eye surgeon for corrective surgery.
According to the doctor – another of the RCH’s lovely specialists who has followed up with Lil Z and even spoke with Red Hill Special School to make sure they are providing visual impairment support for her – most children outgrow trichiasis before it becomes a problem. However, because Lil Z has microcephaly, her head (and therefore her face) aren’t growing as fast as they should, and therefore, it has become a greater problem for her.
I feel sad that she has spent so many months in discomfort. The thought of living every day of your life with an eyelash in your eye sounds unpleasant – but imagine ALL your lower eyelashes in both your eyes. She has been suffering and this makes me both profoundly sad and angry that no one had caught it sooner. I could rant and rave about another ophthalmologist we saw who was so busy giving me a lecture on how I should be wearing solid colours and lipstick (to encourage Lil Z to focus) that she completely brushed off the trichiasis – but I won’t.
The fact that the surgery to correct the trichiasis is going ahead on Monday morning, is a huge comfort. So much so that I’ve been counting down the days.
I also feel hopeful. Several doctors and therapists have told me that this could be akin to a miracle cure for Lil Z. It should help substantially to improve her vision. And this may have a knock on effect where it also improves her behaviour and her willingness to explore.
Imagine that it hurts every time you open your eyes, and when you do, things are blurred and out of focus. So, you try not to open your eyes. But keeping your eyes closed means that the world becomes a much scarier, unpredictable place. New people, places and activities are frightening because you can’t see what is happening and you have no sense of control. Things you don’t see suddenly come at you, new feelings appear from nowhere, you’re sat or laid down on something unfamiliar and you have no idea what it is. So you resist anything new. That’s where Lil Z is at right now.
What we are all hoping is that after the surgery, it won’t hurt to look at the world anymore. And because it doesn’t hurt, perhaps she will start to do it a bit more. And that could lead to a greater feeling of confidence and a willingness to maybe try something new.
No, it’s not a cure. But making Lil Z’s life happier is still a miracle worth having.
And with top and bottom eyelashes on display, she’s going to be a little stunner. Watch out world.