And The Countdown Begins

congenital bilateral cataract

Seven days. Seven days before our lives will undertake a major turn this early in the road trip to life. I feel anxious, I am a bit scared, worried, happy. I don’t really know how to describe how I feel at the moment. All I know is that comes the end of the week, our lives will never be the same again.

My son was born with congenital bilateral cataract. For my son’s first week of life, I was actually hoping and praying so hard that it was just a film covering his eyes caused by his jaundice (I read something about this one when I was doing research).  During his confinement, we got a referral to a pedia-ophthalmologist (who I later on learned was not really a pedia-ophtha). My heart broke when the doctor confirmed that my son indeed have cataracts in both eyes. The only option given us was surgery. There is no other way to correct cataract but to extract the lens from the eyes. While the doctor was explaining, my mind was raising. How? Why? Howcome it did not show any sign of it during pre-natal check ups?

A lot of questions were in my mind but at the same time, his condition was not really sinking in. I was still hoping and praying that the cataracts will miraculously disappear and that my son won’t have to undergo surgery and that his visual development will be normal. I researched all about congenital bilateral cataract, how it manifests, the causes of it and all those stuff until my head literally hurts and overloaded with information. For some reason, I was not able to find what I really wanted and not one of the sites I’ve been to to get information gave me the answer that I wanted to hear.

We have a family friend who’s an ophthalmologist. We told her the case of Z and she explained what the procedure will be. She also explained that the cataract removal procedure must be done within 6-8 weeks of life to ensure optimum visual development. This was a crucial information that the first ophthalmologist never mentioned.

With that time frame as my guide, I tried to push for everything that needs to be done so that we can schedule the surgery within the first 8 weeks of life. However, it was not as easy as I have thought it would be. We experienced a lot of delays in setting appointments with consultants (as we have to get a neurologist’s and cardiologist’s clearance to proceed with surgery) due to conflicts in schedule and resources as well. It was also hard to schedule some of the required lab works. When you have very limited resources, it really gets frustrating when you have to delay some of the things that are urgently needed because you still have to find resources to proceed.

To cut it all short, my son got the clearance from the pedia-neurologist and pedia-cardiologist. The new pedia-ophthalmologist looking after my son’s eyes have now scheduled the surgery on November 23 at 7AM. It also happens to be my bestfriend’s birthday.

As I always say, my son is strong. He is my little warrior. But as a Mom, I cannot help not to worry about him. He may not understand what’s happening around him just yet. But, you know, I can’t help but feel helpless. Things shouldn’t happen this way. When I was still pregnant, I was already envisioning how my life would change once my son is born. In my vision, he will come out all normal and healthy, no sickness, no whatsoever. Then life gave me something that was totally out of that vision.

After next weekend, my son’s care will never be the same again. It will be some kind of more special. 🙂 Everything around him has to be really clean. Nobody can touch the baby without properly washing hands with soap and alcohol. I can’t bring him anywhere just yet. The places where he will go would have to be clean, too. Bottomline, as much as possible, I don’t want to deal with infection after Saturday. Not even the slightest bit of infection. Right now, just the word actually scares me.

*Sigh* I know, I know. I need to calm down a bit. I need a little breather before we proceed. Right now, all I want is for my son to be able to see. I want him to see me and know that I am his Mom, I want him to be able to see and recognize our family and relatives, I want him to be able to see the world around him. I want to see him getting curious and more observant with what he will eventually see.

As of now, whenever he plays, you can already tell that he wants to see the things that he hears. He tries to stare at whatever caught his attention and I know the frustrating feeling that one would get if you cannot see it. With his eagerness to see, I am hoping that this will help him develop his vision properly in the long run.

I am so hoping and praying that everything will turn out fine and no further complications will happen. No infection will occur, everything will be clean and orderly.  I want my son to start living life in the best possible way so I would really want this to be over. I hope this will be the last one.

By the way, my son’s eyes are turning brown. Looks like he got my eye color. 🙂


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