Omphile’s journey with glaucoma has been a fascinating ride with lots of highs and lows. We are sharing it with the hope that it will inspire and encourage other parents and children who are dealing with childhood glaucoma or other chronic conditions. In sharing our story, I (Mama) will focus on the early years and then Omphile will focus on the latter years in her own words.
My concerns about Omphile’s eyes started when she was about three weeks old. She was a happy, healthy little girl who responded with joy to music and her mom’s voice. She welcomed her sisters’ kisses and cuddles with loud giggles. What was a bit odd, though, was her lack of interest in visual stimuli. She responded only to sound and touch. As time went on, her eyes looked a bit bigger and took on a bluish, glassy look. All that time, she showed no signs of distress.
When she went for her six-week check-up with a paediatrician, she kept her eyes closed throughout the physical exam. When we finally coaxed her to open them, the doctor took one look and agreed with me that it would be a good idea to have them checked by an eye specialist. Right there and then, he called an ophthalmologist whose rooms were just a kilometre away and asked her to see us immediately.
The ophthalmologist confirmed that the baby had all the outward signs of congenital glaucoma. A theatre booking had to be made immediately so that they could operate on the baby’s eyes as soon as possible. This all happened on a Friday afternoon and on Monday we went for a briefing session and medication to prepare her delicate little eyes for the operation. At this point, we were introduced to Dr Grant McLaren (now Professor and Head of Wits Ophthalmology Department) who would lead the operating team and would, from that point on, be our doctor for life.
At 8am on Tuesday morning the baby was wheeled into theatre. One eye was operated on that day. Throughout the hour and a half that she was in theatre, I prayed and paced up and down just outside the theatre like a possessed woman. Up to a few days earlier, I had never even heard about glaucoma, let alone congenital glaucoma, and here I was waiting to find out if my child would be blind for life.
A few minutes before the baby was wheeled out, the doctor came to brief me. The operation had gone well. Her optic nerve wasn’t completely damaged so there was hope that the baby would have a bit of sight.
We received more medication from the first ophthalmologist to take home and were discharged late that evening. For the next few days, my baby screamed her lungs out every time we administered her eye drops. Eventually I could not take the trauma anymore and I called Dr McLaren – who had led the operating team – and requested an urgent check-up. Horror of horrors! His colleague had kept us on the pre-op medication instead of prescribing post-op medication to reduce the swelling. With the correct medication, Omphile slept “like a baby.”
Two weeks later, when the first eye was healed, she went in to have the second eye operated on. Once again, the operation was a success. She was in theatre two more times soon thereafter, then once again just before her 12th birthday.
Childcare was a challenge right from the beginning, from careless nannies to day-care centres that did not know how to stimulate or take care of a child with very limited vision. The plus-side of their ineptitude was that Omphile developed above-average resilience and an incredibly high pain threshold. When she completed her school-readiness year, the teacher called me in – her face reflecting immense pity – and told me that my child would be able to get by at school but would always be “mediocre”. Her assessment was that her limited sight had affected her intellect.
Because of her pre-school experiences, I was determined to find the best school for the visually-impaired, where her intellect and talent would be fully stimulated. After a long meeting with the principal of Prinshof School in Pretoria, followed by a ‘meet-and-greet’ with their Grade One teacher, I knew I had found the right school for my child. The teacher had post-grad qualifications in special education, more than twenty years’ teaching experience and tons of love.
Up to now, Omphile has proved to be an exceptionally intelligent learner and quite an activist for the rights of visually-impaired children.
At this point, I’m happy to hand over to Omphile to tell her story in her own words.
In Omphile’s own words…
“My experience with my condition so far hasn’t been very difficult, especially because I’ve had it since birth. One thing I’ve noticed, however, is that I’m much more aware of things that affect me due to Glaucoma now, as a teenager, than I was when I was younger; things like not being able to admire a beautiful far-off view with my friends and (more often) my family; confused children, and even adults, staring at me, asking strange questions as to why I put something too close to my eyes just to read. (And then adding the annoying “Why don’t you just use glasses?”)
But one experience that I was way too aware of was the operation I had in 2014, when I was 12. I had to go in for surgery because the pressure in my right eye, my more problematic eye, was dangerously high. At first, I wasn’t too nervous, because I had full trust in my doctor. Unfortunately, doubt comes around sooner or later.
The morning of my op, I had been ready and well-educated about what I was going in for: a trabeculectomy, (quite a mouthful, I know). I was able to calm myself down up until I was told that it was time. Those few minutes I was being rolled away to theatre, I started to realise what was actually happening. I started praying and subtly panicking until I was no longer conscious.
A few hours later, I woke up in my hospital bed and I was completely fine. The operation had been successful and I wore an eye patch for about two weeks. The healing process was fast and comfortable, and since then, I have not had any serious problems with my eyes.
My school experience…
Pre-school was not fun. The teachers didn’t really understand my condition, so that set me back quite a bit.
Imagine the refreshing change of pace that came with a school that really got me. There were monitors in the classrooms instead of a board, so I could actually see what the class was doing. My marks were getting better and better as the years went by, and to this day, I pass all of my subjects with flying colours.
At Prinshof, I’ve met many people who can do incredible things despite their disability, which inspires me every day. One of my close friends wrote a book that has been published and is very successful. Another is an amazing gymnast, and the other does tap and contemporary dancing, singing and acting, all while not having sight. There are many more things I could name, but the list is much too long.
I’ve been able to take music as a subject and there are a lot of things I learn through my singing and piano lessons that I use in my academic work. One is the method of learning how to play your instrument as a blind student. The student reads their piece, memorises it, and then plays it. This has made my memory really sharp and I can apply it in both music and academic work.
Currently, I have many dreams and ambitions for the future. I would not have had so much confidence in myself had I been at a place where I wasn’t understood, or without a mother who taught me not to feel sorry for myself, but to rather work through it. I know that even with my impairment, I can do absolutely anything I set my mind to.”
What we’ve learnt along the way
- Trust your instincts. If anything looks odd, have it checked. Don’t be fooled by the absence of pain
- If you want to get a second opinion, do so quickly before the symptoms get worse and possibly cost your child her sight.
- Learn as much as you can about the condition to help you recognise signs and symptoms that you need to look out for and avoid confusion that can be caused by the opinions of well-meaning friends and family members. In our case, adult glaucoma sufferers discouraged us from letting the ophthalmologists perform the sight-saving operations, citing themselves as examples that glaucoma could be managed without costly operations.
- Follow doctors’ instructions precisely, use medication correctly and honour check-up dates even if the patient is not experiencing any discomfort.
- Instill confidence in the child so that she embraces and works with her condition rather than trying to hide it. A healthy sense of humour also helps to mitigate the stares and stupid remarks of uninformed people.
- Take time to find the best school – whether it’s a special school or a mainstream school that is willing and able to integrate your child’s special requirements.
- Invest in developing any talents that you see in the child. The joy of being really good at something neutralises the limitations caused by the child’s impairment.
- Never underestimate the connection between faith and health.