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The Value of a Second Opinion

When we were first given Dane's diagnoses of a unilateral congenital cataract, we were told it was too late to do anything and he would go blind. Being brave enough to get a second opinion has made all the difference for his vision.

Boy with congenital cataract living life to the full

Dane was diagnosed with a congenital cataract but it hasn’t stopped him.

My husband refused to accept Dane's vision outcome

I was recently reading a post in a cataract Facebook group and there was a lady with a really similar story to Dane’s. Her daughter was diagnosed with a cataract and her first PO advised not to go ahead with lens removal and to just let her daughter go blind. When this happened to us, I was completely accepting of the specialist’s opinion and the outcome he expected for Dane. I was making plans on how to deal with a vision impaired child and trying to stay positive. My husband, on the other hand, did not cope with this prognosis quite as well. He didn’t (or couldn’t) speak for three days. I’d never seen him so upset in his life. He couldn’t face the possibility of his little boy being limited in life. After the three days of silence though, he went into denial mode. He decided that this was not an acceptable outcome for his son and was going to move heaven and earth to change it. Everyday when I look at Dane, I thank goodness that he did. 

We were persistent in contacting the only other doctor in Brisbane

So this was in 2010 and at the time we were living in Brisbane. Pediatric ophthalmologists were few and far between (they still are really). We’d seen one and there was really only one other – and so my husband began his relentless crusade to see him. When he made the initial phone call to the hospital, he was told it would be a 6-12 month wait for an appointment. Obviously, this was completely unacceptable for a child with a cataract, with every day without sight causing long term ‘damage’. So my husband went into the hospital to explain the situation and to insist on an appointment immediately. Dr Google came in handy here because he could quote all manner of information and statistics as to why it required urgent attention. 

We finally got an appointment!

Unfortunately, the doctor was overseas for a week at a conference and the hospital staff were (and still are) swamped, so we didn’t get very far. But after a week of twice daily phone calls and going into the hospital three times (yep, my husband is VERY persistent!), we finally got an appointment. This was now 3 weeks after the initial diagnosis with the GP and 10 days after the appointment with the original PO. 

Having to decide whether or not to operate on our baby to possibly get terrible results was gut wrenching.

The next few days were awful. Having to decide whether or not to operate on our baby to possibly get terrible results was gut wrenching. Would he get an infection and potentially lose his eye and have to have a glass eye? Would he be okay going under a general anesthetic? How would we all cope with contact lenses and patching? What was the impact going to be on our older child, who was only 2 and still needed lots of parent attention? But we made the decision to go ahead with the surgery and for us, it was absolutely the right choice. 

When your children are babies you have no idea what sort of kid they're going to be.

Will they be bookworms (like my daughter is) or will they be sporty? Will they want to do swimming or play footy? Turns out that Dane is a clever little thing but is also a seriously sporty kid. If there’s a ball, bat, running or swimming involved, he wants in. He does swimming training, nippers, soccer, hockey, AFL, skateboarding and surfing – and whatever else he can play at lunchtime and on the weekends. 

So getting back to the Facebook post I was reading, it made me ponder what Dane’s life would have been like had we chosen not to go ahead with the surgery and just allow him to go blind in one eye. I’m sure it’s not healthy to think about the ‘what ifs’ but as a parent this is pretty much a daily thought (for me anyway). If we hadn’t gotten that second opinion, how would Dane go playing soccer if he had no peripheral vision? His depth perception isn’t brilliant as it is but what if he had none and was trying to drop ramps at skateboarding? Yes, he does do all his water activities ‘one eyed’ and there are a few little things I’ve noticed that his vision affects. When he does backstroke at swimming training he constantly hits the lane rope because his ‘bad’ eye is the one closest to the lane rope so he can’t see it. When he dives for a flag at nippers, he’ll occasionally completely miss it because he has no depth perception. He can’t be goalie at soccer because if he’s hit in the face his contact lens will cut his eye (trust me, it’s happened). But really, these are small things and we’re trying to develop work arounds for him. 

Don't ever be afraid to get a second opinion

I truly feel that had my husband not persisted in getting that second opinion, Dane’s life would have been markedly different. Perhaps not a dramatic difference but certainly enough of a change from what it is now. I guess the point I’m trying to make is, don’t ever be afraid to get a second opinion. It might be challenging to actually get an appointment. It might cost more money that you might not quite have. But at the end of day, it could make a huge difference to your child’s life.

A second opinion gave Dane more opportunity to do the things he loves and for that I’ll always be grateful.