My daughter was diagnosed with congenital glaucoma at one week old and was admitted to Great Ormond Street Hospital in London the next day. We all produce a small amount of fluid in our eyes to keep them healthy, this creates pressure in the eye, keeping it round (like an inflated balloon). It then drains out of the eye, back into the bloodstream, through blood vessels. My daughter's drainage system wasn't working, and probably never developed. This meant she needed several operations to create a new drainage system. The cornea (front window of the eye), which should be crystal clear, became 'waterlogged' resulting in it becoming opaque. We couldn't see in, and she couldn't see out, apart from light, which was painful to her. She was in terrible discomfort from the glaucoma and the medical intervention. As well as weekly operations, we were coming in for outpatient appoinments up to 4x a week, to examine her and measure pressure. We would usually wait around 4 hrs to be seen. She would also need eye drops, and at one point, we were giving her 60 drops a day, between both eyes. Eye drops are not effective if you put them all in straight away, so we would often need to disturb her every 15 minutes, restraining her each time. She was genuinely traumatised by the whole experience, she couldn't sleep for more than an hour at a time and would scream throughout the day and night. We would not have carried on the surgery if it was just for her sight, but her eyes would have been painful without surgery and would probably need to be removed. We had decided to discuss calling it a day with the consultant, as we couldn't put her through anymore. Strangely, before we spoke, the consultant said he wanted us to speak to his colleague, who in turn, said that he thought her eye may collapse if surgery continued. He referred us to Professor khaw at Moorfields Eye Hospital. We said we were only prepared to continue trying, if there was a long term plan. He put an implant consisiting of a drainage tube into each eye. She has still needed lots of surgery as her eyes are resisitent to treatment, but the implants have worked, and keep the pressure down, although the implant on the right eye may fail soon, and the consultant is going to put an additional larger one in at any point. Her corneas have cleared, although are still hazy, and she has useful sight. The pressure is maintained so that it is not causing further obvious optic nerve damage, and her eyes are comfortable. She has had around 30 procedures in 4 years and this is on-going, although for the last 3 years these have not been such big operations, but to control the scarring in her eye, which prevents the implants working. Although we would like her to keep the sight she has, we don't wish for it, and don't wish she had more, our main concern is for her comfort, health and happiness.
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Tips for parents with children living with glaucoma
International Glaucoma Association
PGCFA
Childrens Glaucoma Foundation
Wills Glaucoma service and foundation
The Glaucoma Foundation
Glaucoma Research Foundation
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