I am reposting this because for some reason after I posted it the code changed the image URLs to https and that wasn't showing my pictures, and to me the pictures are important.
Meet my son Elliott
pictures are all recent and not from the time I am talking about
When Elliott was born, everything was perfect. He was wrinkly and so ugly he was a cute baby boy. All toes and fingers were present, everything was perfect.
Until about 3-4 months old. Then we noticed a slight lazy eye. In didn't go inwards so we knew that was easy to correct with patching. So we didn't stress about it. You can typically start patching at 6 months, so at 6 months old I bought some patches to see how he would react to it. He didn't react well, and it looked like he couldn't see at all when we patched the "strong" eye.
We took him to the doctors immediately. You hear of children and babies having tumours behind an eye where they lose the eye. So we were very worried (The guy Michael portrayed in the movie the big short lost his eye to a tumour when we was a child). Our doctor being very good, referred us to two eye doctors, one that was able to see Elliott the next day and another at the local hospital that was a little harder to make an appointment with.
The next day we saw the general eye doctor. Elliott at 6 months wasn't very happy with all the testing, but the doctor noticed that in his one eye, his optic nerve was partially atrophied (Please note that this is very hard for me to write about, so please forgive me if I miss anything because I am taking breaks between paragraphs). The doctor referred us again to the local children's hospital but for the optic nerve specialist.
Both my wife and I started googling (very bad idea). We saw the worst of the worst. The level of fear that was reached still makes me cry when I think about it. Our once perfect son was not perfect, and the worst of the worst could mean mental retardation and never being able to survive without assistance. Most things we found that could be the cause were much worst than vision lost as the brain was affected. We even tried to find some less bad reasons that could cause an atrophied optic nerve... and nope, nothing but less severe cases of the same thing. 1 in 10000 babies born had this. I am trying to remember the name, can't sorry and I really can't google it again.
So after what seemed an eternity we had our appointment with the optic nerve specialist at the local children's hospital. The doctor's (one of north american's best in that field) student examined Elliott much like the previous eye doctor did. She didn't find any pressure on the eye (which would be a sign of a tumour--which at the time all considering we were hoping for above the other options). She also noticed the optic nerve issue. The doctor came in and they talked for a minute then the doctor tried to get a really good view of Elliott's optic nerve. Elliott being a 6 month old, didn't participate very well.
We had to go into another room where they had a special camera that could see the inside of the eye in better resolution. The problem was we needed to hold him down so he could have this camera pressed against his eye. They added a clamp to keep his eye open and we held him down. Elliott screaming the whole time. The doctor got the images that he wanted.
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After the doctor examined the images, he informed us that his optic nerve is gone, completely atrophied. He didn't know the cause or what was going on so he said we needed an MRI to continue the investigation. He didn't want to speculate. Doctors are so scared of getting sued that I don't blame him.
For those who don't know, your optic nerve is a lot like your spinal cord. Current science cannot fix this nerve bundle. Stem cells cannot, nothing can as of now. And if in the future this could be fixed, it is already too late for Elliott as his brain has adapted to the loss and the parts of his brain that would receive those signals are now allocated for other uses.
Because we live in a socialized medicine tax farm, we had to wait for an MRI (even though Elliott's case was considered urgent). So we waited and waited in fear. I would have paid anything to have sped up that process. Because getting a passport for him was a lengthy enough process (to go to a slightly freer tax farm) and then having a different doctor and the complicated communications if we did such a thing, so we decided to wait.
Time for the MRI. Elliott had to be kept awake a lot longer than he was used to being and also kept hungry. This is so he can sleep through the MRI. If you have ever dealt with a hungry sleepy baby, multiply that by about 100 and that was Elliott. When the time came, they gave him ear plugs and some melatonin and my wife nursed him to sleep. Down he went to the MRI.
I stayed in the waiting room as my wife was with him in the MRI room for an hour. There was no anticipation because it's not like we were going to get any results that day.
Fortunately it wasn't long before we got the results. We saw the specialist and he informed us there was no tumour and no optic nerve. The only good news he could offer was that there wasn't any indication of anything else wrong. All the structures in the brain seemed normal. He had said that he has never seen a case like this before, and he wanted to talk to his colleagues and share the MRI images before he continues to investigate. Just because images of the brain look normal doesn't mean that they are normal, just that they appeared to be. Still some good news, but we weren't very happy with not knowing what caused this, and if there was anything else going on in Elliott's brain that we should know about.
After some time waiting, we got a call from the specialist. He said that he talked to many colleagues and that they were all puzzled by the MRI images. He asked if he could add the images to a web site where many other physicians can offer suggestions. He mentioned that one of his colleague offered a possibility, but very remote one, of a blood clot causing this damage. He thought there was no harm in testing for this, so we proceeded with it. This involved two things, one an ultrasound of his neck (where blood clots often originate from) and a radioactive dye imaging test to see if there were any blockage.
The ultrasound happened quickly enough (again Elliott's case is still considered urgent) and everything there seemed fine. However, getting Elliott to be still long enough proved very challenging and the ultrasound tech seem to have given up.
The next test required Elliott to be put asleep and an operating room... which we waited weeks for the room to have an opening and the doctor to be available.
*I tried to find a picture of him in his hospital gown but my wife takes sooooo many pictures that I couldn't find it*
While we waited for him to go into the operating room we had to change him into a little hospital gown. So strange that they make those things so small. He looked so cute in it and while he played he had no idea what he was about to experience.
When the nurse came and got him, we walked with him to the doors where we needed to let him go with the nurse. He was strangely calm as we watched him through the windows in the door in the nurse's arms walking away. It was strange because he never let a stranger hold him that long before. It's like he knew this was ok.
So down he went. Not only did they do the radioactive dye imaging test, they scan both his eyes with the camera that goes against the eye and they did a bunch of vision tests on his good eye. All this while we sat in a room full of worried parents waiting for our number to be called.
Once our number was called and before we got to go into the recovery room to see our little monster the doctor talked to us. He said he got one of his friends, a retina specialist, to join him in the operating room.
The doctor said that they couldn't find a cause still. That 50% of the retina's blood vessels were also missing in the bad eye. He has never seen anything like this. The only good news he had was that his other eye was perfect and had perfect vision and that there doesn't seem to be anything actively going on that could cause anything.
He speculated a little, but nothing that gave us peace of mind. He said that he wants Elliott to see another doctor, just to gauge his development . Which a few weeks later we did and that doctor didn't have any concerns.
What Now?
Elliott is almost a year old now, and seems to be developing fine. Lots of trouble falling asleep but we hear that is normal sometimes.
We have mostly accepted (with difficulty) that he is blind in one eye. Considering the alternative, we are happy. I have done some research in depth perception and it should be ok growing up, it's mostly a problem for people who lose an eye later in life.
I really want to develop apps that help those people with vision in only one eye by helping train people's single eye depth perception. However, no one else would pay for such a thing. I even tried go fund me, and only collected $20 in the last 2 months. Not a great help towards taking the time off to develop those kinds of apps. (I am a programmer and have the ability to make apps)
If you liked my story, please upvote it and spread the word. Also, please comment, I plan on sharing this with my son one day and the comments might give him something.