My little boy is having surgery next week and I am scared beyond words. I wasn’t going to write about it, but as my mum once said, “The more people that know, the more people who share your worry, the less worry you’ll carry”. So here I am.
As a mum, you do everything you can to keep your kids safe. Provide a warm and loving home. Give them a solid foundation to be successful in all that they choose. You protect them from all the bad things in the world, and you spend your days making them laugh until it hurts.
But sometimes, just sometimes, it’s out of your control. Sometimes they need more than just their mum.
Here’s our story so far with Bilateral Congenital Cataracts.
When Hudson (now 11 months) was only a few months old, we noticed that his eyes were turning in. We didn’t think too much of it at the time because he was still a baby and developing more each day. But our GP who also picked it up during a general check-up, suggested we see a specialist just to make sure everything was OK. And so we did.
The specialist we saw said that as he was still developing, the best thing to do was to measure his eyes now and then again in 3 months’ time to see if there was any change. If they were getting better, we should leave them alone. But if they were getting worse, a simple surgery to cut a tiny bit of the muscle would ensure they no longer turned in, and prevent any halt in his development caused by an impaired vision.
We were optimistic when we went in for our follow up appointment as we’d noticed Hudson’s eyes weren’t turning in as much. But it only took a few minutes for our optimism to change to fear. The specialist examined his eyes and told us he has a cataract in his right eye. He spent the next hour explaining to us that without surgery, Hudson would not be able to see from his right eye.
What is a cataract?
A cataract is a cloudy area in the lens of the eye. The lens should be clear, in order to focus images properly. If the cataract is large or dense enough, it can cause blurry vision or block vision.
Most people think of cataracts as something that happens to our eyes as we age, and age-related cataracts are, in fact, the most common type. But cataracts can also affect newborns and children – and when they do, they can sometimes be accompanied by special urgency and challenges.
A baby or young child with an untreated cataract could be slowly going blind. This is because when the cloudy lens blocks light from getting to the retina (the back of the eye), the retina can’t send visual information to the brain at a crucial time when eye and brain are working together to learn to see. If the cataract isn’t removed in time, it may be too late – the brain may never learn to see, even if the cataract is removed.
I felt numb. I felt sick. I felt helpless. Here is one of the top surgeons in the country telling me that my son, my baby, might not be able to see out of his right eye. That he needs surgery. That the surgery might not work. That he might not ever be able to see out of his right eye. I was scared, and I was heartbroken. But one of the things I’ve learnt through my experiences with ill health is that knowledge is power. The more you know, the more powerful you become. So we asked question after question. And soon the fear was joined by determination. Determination to know and do everything possible to be able to help my boy.
Without knowing the extent of the cataract, the surgeon suggested Hudson go under general anaesthetic so his eyes could be examined properly. And so, he was booked in for the following week – Tuesday after the Easter break.
Hudson was incredible on that day. The fasting didn’t seem to bother him. He was playing with the toys and the other kids. He sat there like a champ through the eye drops, and he even wore the hospital gown with such pride. Only one parent could be there when they put him to sleep, and I instantly put my hand up. Watching, and helping restrain my sweet boy was one of the hardest things I have ever had to do. It still makes me numb thinking about it.
The whole thing only took about half an hour. The surgeon came out and spoke to us briefly. He told us that the cataract in his right eye was dense, and that he had a small cataract in his left eye. He suspected that vision in the right eye was weak and Hudson could only see shapes and shadows. Vision in the left eye was fine for now, but it could worsen if the cataract progresses.
Hudson was officially diagnosed as having “Bilateral Congenital Cataracts”, and he will be “Aphakic” meaning, “without a lens”.
Surgery to remove the cataract from his right eye was needed, and quickly. The urgency was to give the eye and the brain the best possible chance at learning to see, before the brain decides to give up trying to see out of that right eye.
The intense post-surgery physiotherapy is crucial to the success of the surgery. It involves contact lenses, patching, numerous follow up appointments and a longer term plan.
During the surgery, the lens that developed the cataract is removed, which leaves the eye very much out of focus. This focusing power needs to be replaced. This can be done with contact lenses, glasses, or an artificial lens. As Hudson’s eyes are still developing, to fit him with an artificial lens now, will mean numerous additional surgeries to change the size of the lens will be required in the coming years. As he’s only having surgery on the one eye for now, glasses can’t be worn as it isn’t possible to have just the one lens as strong as he needs at the moment. So he’ll need to wear a contact lens. We’ll need to put the contact lens in his eye each morning, and take it out each night. This will continue indefinitely.
Because Hudson can’t see from his right eye, the left eye is doing most of the work. This means that vision in that eye gets stronger, and the eyes don’t develop at the same rate. ‘Patching’ the good eye forces the other eye to develop better vision to compensate. We’ve been told Hudson will be distressed when we first start patching, as he won’t be able to see anything. We’ll be patching for 5 hours per day to begin with, and will continue to indefinitely.
We have been blessed with Hudson’s surgeon. He is the best in the business and he is so gentle, calm and explains things thoroughly. We’re also extremely lucky that Hudson’s surgery as well as all post-surgery appointments will be at the Royal Children’s Hospital (Melbourne). The optometrist who will be providing the contact lenses and patches is also incredible with kids. She, like the surgeon, is a leader in her field. Together, with our GP, our ‘team’ is second to none. We will be seeing them twice a week for a few weeks, then once a month, then once every two months and gradually, only once every few months. It is so important to me that the relationship we have with these people is built on trust and compassion, as a lot is dependant on them.
When Hudson is between 8-9 years old, we can elect to have surgery to fit his right eye with an artificial lens. This would mean no more contact lenses. If the cataract in his left eye progresses to the point of having an impact on his vision, he’d need to have surgery on that eye. He’d need to do patching, but it may mean that instead of contacts, he can change to glasses.
There have been so many things going through my head since this whole thing started only a few weeks back. Will my son be blind? Will he have a normal childhood filled with fun and adventure just like his brother Benny? Will the surgery work? How will he recover from the surgery? Will he be different? Will he stop playing like he does now? Will he stop laughing? Will he hate me because I’ll be the one putting on the patches that prevent him from being able to see? When will everything go back to normal? Or is this another new normal?
I guess it’s only normal to fear the worst, but be prepared to fight for the best. I’m a mum. and i’m human. I’d be worried if I didn’t have those thoughts. I know I need to be strong and I need to be brave. I need to just be there. That’s my role in all of this.
I’m looking at the positives though. He can see. He can definitely see, because that kid will crawl across the room to a crumb on the floor. He is walking. He is thriving in his development. There are so many signs that show me his vision is not as impaired as it could be.
Hudson is a strong kid. He’s resilient. He’s one of those kids that will bump their head or fall off the couch and not even care. He’d probably just laugh! I am hoping that this strength will get him through the surgery, and his new life of being an aphakic kid.
My sweet boy, I pray that you’re strong enough.
If you’re still reading this – I know it was a long one – and you’re not doing anything on Tuesday, please think of him. Send as much strength as you can his way. And if you’re going through the same thing yourself with your kids, please, tell me that everything will be ok.
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