The sonographer zooms in, the sonographer zooms out. Again.
The ultrasound session feels like it has stalled - we’ve been looking at bub’s eyes for a while now.
This is normal right?
I've sat through a few ultrasounds... what happens next is the bit that keeps an expectant parent awake at night. The sonographer has gone quiet.
Eventually…"I’ll be back in moment".
After what seems like a hushed eternity, the sonographer re-enters with the boss – the practice bears his name in the way a celebrity chef might eponymously brand his Michelin-starred restaurant - and starts asking questions that we’ve never been asked before. My heart makes a move towards my throat. My stomach sinks as if experiencing a sudden change of altitude.
No, not normal.
And then the man with 35 years of experience tells you what he thinks he’s looking at, but can’t be certain of because he’s never actually seen it for himself.
• • •
The vast majority of infant cataracts are discovered during the routine screening that occurs in the days and weeks after birth, with a few more diagnosed in toddlers and preschoolers. However only a handful of in utero diagnoses of congenital cataracts are reported each year, worldwide (advances in ultrasound technology may well see this number increase). To this day I am undecided as to whether this prenatal knowledge is a blessing or a curse. There’s nothing you can do but wait until the birth, while an unsettling mix of shock, grief and sadness threaten to rip the joy from your pregnancy. But here’s the positive spin… it eliminates the trauma of having the diagnosis come crashing out of the blue in those first few sleepless post-partum days. It provides time to consult, to research, to become informed, and to be prepared to hit the ground running.
So hit the ground running we did. Tom arrived in more or less the usual way, and after finally having the cataracts’ existence confirmed, his first few weeks were a flurry of hospital visits and specialist appointments, dilating drops and waiting rooms. But they were also full of the normal, joyous, new baby stuff... champagne with friends, visits from family, outings to cafes. Tom was an otherwise perfectly healthy baby, a blessing that was not lost on us - you don't have to spend long amongst other families in a children’s hospital to start feeling very fortunate. Followed quickly by feelings of gratitude that we are in THIS hospital, in THIS country.
The decision to proceed with a bilateral lensectomy can be absolutely gut wrenching. Perhaps not so much if the cataracts absolutely need to go (large and central) or appear relatively harmless (small and peripheral). But Tom’s were somewhat borderline, leaving us with a decision to make. This is when you realise there’s only so much your crash course in becoming highly informed can help now – at some point you have to put your child’s life in the hands of the people who do this every day, especially when the evidence is a little sketchy.
In the agonising debate, we tried to cut through the fog of information, opinion and noise to distil the essence of the options. Admittedly somewhat negatively, I based my thinking on “what is the worst case scenario if we make the WRONG decision?” Remove the lenses in error? A lifetime of intervention, treatment and complications that might have been unnecessary. Decide to do nothing, and get it wrong? Too awful to think about.
With LOTS of guidance from the team at the children’s hospital we made the decision to go ahead with the surgery. Sure, we will never know if it was the right call, but despite the hard work and emotional tolls paid we’ve never regretted or second-guessed our decision. I think this has a lot to do with the incredible support of the paediatric eye care community that we’re now part of.
Fast forward 3 years and the shock, sadness and stress of those early days – whilst occasionally echoing into the present – have given way to focusing on providing the best possible care and just getting on with the job. The contact lens routine is now like getting dressed in the morning or brushing teeth at night – and just like any other part of the routine, some days it’s too easy, and some days it goes completely pear-shaped. At its worst, I liken contact lens removal to trying to catch a fish with a lasso – IMPOSSIBLE! HOW DOES ANYONE DO THIS?! THERE’S NO WAY WE CAN DO THIS! But we just do – I don’t know how, but we stumble through.
We balance anxieties about the future (the prospect of impaired vision and Coke-bottle glasses, further surgery, lifestyle limitations both real and imagined, the indelible spectre of glaucoma) with the victories so far achieved (successful surgeries, minimal complications, access to one of the world’s best care teams). Overall we know exactly where we sit on the spectrum of luck and hope to leverage the positive experiences and the things we’ve learned in a way that might help make the journey just a little bit easier for the next family facing a similar challenge.
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