Dane’s story with a unilateral congenital cataract
Our story began when Dane was six months old. I took him to his general practitioner for his
regular checkup and to receive his immunisations. The visit was all very routine until the
doctor checked Dane’s eyes. She said that she could see something in the back of his eye
and asked another doctor in the practice to come and have a look. I was immediately
concerned.
After collaborating with the second doctor, I was informed that there was a cloud on Dane’s
lens. The doctor told us that it was most likely a cataract but there was a small possibility it
was a tumour (which I now know would have been Retinoblastoma). The news was shocking
and set me into a panic. We were told if it was in fact a cataract Dane would need a simple
surgery to correct the vision where an artificial lens would replace his clouded lens.
However, if it was a tumour the course of treatment would be much more involved… I
decided not to focus on this possibility.
Dane would need to be examined by one of only two pediatric ophthalmologists in Brisbane
to determine his diagnosis. Our doctor was able to schedule an appointment for Dane just
10 days later. We were grateful for the referral but it was an agonizing10 day wait.
It’s possible to clearly see the unilateral congenital cataract in Dane’s right eye; he was 5 months old by this stage.
On the day Dane met with the specialist he received a thorough exam. We were then
informed that our baby son had a unilateral congenital cataract ( a cataract in one eye that
he most likely had from birth). These are usually picked up and operated on by 6 weeks of
age. We were told that since Dane was now over 6 months old there was nothing that could
be done. The pathways from the eye to brain had already closed down so there was no
chance that even if he had operated, the brain wouldn’t be able to create sight. Eventually
he would simply go blind. Without vision, his eyeball would most likely not grow, eventually
becoming smaller than his other eye. He may also need a contact lens just to make his eye
look ‘normal’, This lens would not help with improving his vision. They further informed us
that his eye would most likely eventually turn, requiring surgery to straighten it. The news
was devastating. I was in shock but distinctly remember the surgeon telling us that he’d be
fine and that plenty of people live with vision in only one eye – he just wouldn’t be able to be
a pilot or an ophthalmologist!
After the shock wore off I immediately went into acceptance and thought, ‘well this is what it
is, we’ll just have to make the best of it’. My husband, on the other hand, did not accept the
diagnosis. He wanted a second opinion and became determined to meet with . the only
other paediatric ophthalmologist in Brisbane. Thank goodness he did!
This new surgeon saw us on two days’ notice and spent hours with us. He went through all
the photos we brought of Dane, trying to determine when the cataract had really started to
dramatically grow.. After much reflection, this surgeon believed that Dane’s cataract
probably had been there from birth but had only grown large enough to be detrimental to his
vision at about 3 or 4 months of age. Because of this timeframe, he agreed to operate but
gave us about a 10% chance of success. Making the decision to go through with the
operation was absolutely agonising. But we decided to do it.
It is now thirteen years later and we are so grateful for this second opinion and our decision
to take a chance with surgery! Dane has 6/7.5 (20/25) vision in his ‘bad’ eye (on a good day
he will sometimes get to 6/6). This was the absolute best case scenario that we could have
hoped for. Our daily challenges are now just around managing the contact lens, avoiding
getting water in his eye, and protecting his eyes so his hard contact lens doesn’t damage his
eye (he plays a LOT of sport!). There are still difficult moments but on the whole, Dane is
doing fantastically well.
Dane sees our specialist every 12 months. At every appointment, she tells us that the
success of Dane’s vision is largely due to our commitment to patching him. We started off
patching him for all but 2 hours a day for the first year, then all but 4 hours, then a total of 4
hours a day, then only 1 hour a day – and since he was five, not at all!
We hope that by sharing our story other families will put their children’s eye health at the
forefront. We also want to encourage families to search out second opinions when the
original diagnosis does not feel quite right. We are so very grateful that we found the
excellent care Dane received. We are very aware that his outcome could have been much
different had we not done these two very important things.