We have learned so much since seeing Cove’s cataract that first day in the hospital and I wanted to just record the journey here for anyone who might want a more complete story than what we can communicate over a social media post or a quick 5 min conversation.
I am going to be completely unscientific and will definitely make this sound way more simple than it probably is. If you are interested in more medically appropriate information I will leave some links at the end. To be very clear I am not a medical professional and this is not advice or a diagnosis for anyone. This is ONLY our experience with a congenital cataract and the treatment plan that Cove has received.
I first saw the cataract in the hospital while staring into Cove’s eyes (as you do when you have a baby less than 24 hours old). It looked like you could see the white part of his eye through the coloured part of his eye. I mentioned it to Michael because I thought it was weird but didn’t really think anything of it. A few days later we mentioned it to our midwife and she checked his red eye reflex and saw it so again we kind of shrugged it off as nothing. Later that evening we saw it again and were able to get photos of it and it was obviously not what a normal eye should look like. (Now I would describe it as looking like a moon, it is grey and kind of milky looking). We called our midwife and when she was able to look at it again she noticed that she was only getting a partial red eye reflex and not a full one as we had thought at first. After that, we got a referral to a pediatric ophthalmologist and thankfully we were able to quickly get an appointment at CHEO where Cove was diagnosed as having a unilateral congenital cataract.
Cataract: when the lens in the eye is cloudy making it hard (or impossible) for light to pass through.
Congenital: means that it was present at birth
Unilateral: means the cataract is only in 1 eye (in Cove’s case it is his left eye)
Our doctor said that it is very rare to find a cause of a unilateral cataract and so they don’t investigate them. When a baby has a cataract in both eyes the cause can be metabolism, genetic or some other condition but when it is a unilateral cataract it is just a glitch in development when the eyes were being formed.
Michael and I were both checked though to make sure we didn’t have them and we both were clear.
Because a cataract is a cloudy lens it means that vision is blurry and light cannot get through to the back of the eye. When it happens in an adult a cataract is easily removed and vision is usually restored to normal. When it happens in a baby it can lead to permanent vision loss if not treated because a baby’s brain is still developing. Having the cataract block out the light will cause the eye and the brain to not create crucial connections that are needed for normal, healthy vision. This means that it is important to remove the cataract as soon as safely possible, usually, this happens between 4-6 weeks of age. In Cove’s case (he got RSV and had to be clear and healthy again before surgery…a whole other story) is happening when he is 9.5 weeks old.
As we have been waiting for surgery we have been using eye drops that keep Cove’s eye dilated to allow as much light in as possible. His cataract is large so if the eye was not dilated no light would be able to get it. This will hopefully help his eye develop as much as possible and will reduce the amount of retraining that will be needed after the cataract is removed.
Surgery. It breaks my heart to write that. My sweet baby boy has to go under general anaesthesia.
The surgery itself is pretty simple (ha that is a very light word for it). They will put 2 cuts in Cove’s eye and then suck out the lens and some of the surrounding gel in the eye (this is a called a vitrectomy). They take out the gel because a baby heals so quickly and so well (read too quickly and too well) that if they don’t scar tissue could build up and basically become another cataract in his eye and they would have to do another surgery to remove that.
Then they will close without putting in another artificial lens (an IOL) as they would in an adult because his eye is still growing and an artificial lens would be too large. If they were to put one in immediately there is a good chance that it would need to be replaced or other complications could occur. Typically they don’t put in an IOL until a child is over 2 (and even then it is all based on development and how the child is coping with the contact lenses).
The amazing thing about this surgery is that it is day surgery. It will take 3 hours and then recovery time but we should be home the same evening if everything goes well. Seems a little crazy to me that you can put a baby under anaesthesia and then send them home ours later but hey I will take it.
A few weeks before surgery we noticed a red spot had developed in Cove’s eye. Turns out one of the blood vessels in his cataract had burst. That in itself is not harmful to but could mean that there is more bleeding behind the cataract that can’t be seen right now. Because of that, there will be a retina specialist on hand during the surgery to help with the gel removal part to make sure more complications don’t occur.
After the surgery (and some healing time) Cove will get a cute, little baby contact lens to wear. We will also have to do patching and other stimulation activities to help the ‘bad’ eye catch up and be as close as possible to the ‘good’ eye vision wise. I will go more into detail on everything in another post when we have actually experienced all of this stuff. We will have a huge learning curve in the next few weeks as we figure all of that out and while I know some information I don’t really feel comfortable talking about it until we have actually experienced it a little.
The biggest thing to take away from all of this is that Cove is going to be ok, more than ok, he is going to be amazing! It’s not going to be the easiest road ahead I am sure but I have met and talked to parents whose kids who had cataracts are thriving. And even now Cove is thriving and the sweetest little baby ever. We have so much hope and peace heading into the surgery which I know is Jesus and I am so thankful for every person who has helped and supported us through everything so far. We love you guys! Thanks for loving us.
Here are some of the links we received from our amazing ophthalmologist if you are interested:
This post was originally published in March 2019.
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