After a rocky pregnancy, Harriet was born four weeks early weighing a light 2 kg. We thought all our worries were over now she was in the world. On a paed check on day three, they noticed a white reflex in her right eye and on investigation they confirmed that she was born with a cataract. We were told that it could be caused by a plethora of possible reason and tests were done to try and work out why. The all clear was given for any syndrome and metabolic issues and we were referred to the children's hospital with a congenital cataract.
Harriet was booked to have the cataract removed and a lensectomy at ten weeks of age. We were petrified of the outcome and the thought of having our tiny baby operated on. Because Harriet was so small we had an overnight stay at the hospital - I can’t sing their praises enough. The next day and the following week gave me goosebumps….her eye swollen and the thought of the pain she would be in but she smiled everyday through it all. A week after surgery we started with her contact lens. It was a HUGE deal. I was petrified of hurting her, of losing it, of not doing a good job and not being good enough! We had a very hard time finding the right fitting lens. We went six months of losing lens after lens and it falling out ten or more times a day and struggling with patching as we didn’t have a lens in for more than half an hour at a time. It was some of the hardest days I had to face and I felt like I was losing my happy baby as putting the lens in every time it fell out was irritating for her. When we thought all was lost we fitted her out with a pair of glasses as a back up plan to try and get some patching in. It was heartbreaking to see her eyesight not improving at each appointment and it also took so much emotional energy out of all of us.
We decided that we would examine Harriet under general anaesthetic (EUA) to have another look at her eye with her ophthalmologist and optometrist present and get a new measurement of the eye to try and find the right lens. After eight months of trying lenses we found the right fit! Four months on, we now patch for six hours a day and lose a lens here and there but it is nothing compared to the first six to eight months.
Harriet is a trooper at the age of 1 but we know that there are new challenges around the corner as she becomes more aware of her patch and lens. We remain positive with her the whole time and ensure that she has 100% control of her situation. She has a matching doll that patches with her, we buy funky coloured patches from OS to keep things fun and we have even named her contact ‘Colin’. She is really involved in the whole process and we never force her to do anything that causes her emotional trauma.
I remember at one of my lowest moments a fellow parent told me that we are doing all this FOR them and NOT TO them…I tell myself this everyday and it makes us as a family a stronger unit. Being able to lean on other parents and also specialists and having an amazing optometrist who has become a friend has made the adjustment so much easier. We embrace each day and each hurdle as a positive challenge and remember the hard times do pass and it is all to help Harriet. Story by Sarah
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