When my wife and I first discovered in 2005 our son, Joshua, then 6-months old, was born with a cataract, we had no idea what kind of difficult journey lay ahead of us. 7 years and 7 surgeries later, our journey is not really ending, but beginning a new chapter.
If you're reading this, maybe it's because you've found yourself in the same situation and are searching for answers. Maybe others are simply interested in what this journey has entailed. We searched high and low for any and all information that could help us grab hold of something -- anything -- that could offer us a sense of direction with our son's condition. But we only found a couple sources outside of the professional stuff. So, my purpose here is to explain to you what a vitrectomy (vih-trek-tuh-me) is, what the procedure entails, and what you can expect.
THE EARLY STAGES: When we discovered our son's eye suffered a detached retina, we were absolutely crushed. His eye doctor warned us in the early stages after his cataract was removed that the retina would always be a cause for concern in the future. Years passed without any problems, so the news of the retinal detachment was a real kick in the gut, as one could well imagine.
What was worse was the speculation that his condition could be Persistent Fetal Vasculature Syndrome (PFVS), which is something that statistically afflicts both eyes. In that case, it would be called Bi-lateral PFVS. More on that in a moment. If "crushed" is what you feel right now, my heart goes out to you. I understand and feel your pain. It is perfectly OK to cry and express to God your intense pain and sorrow for your little one. Don't worry, God won't be offended. I hope this will encourage you because we are where you are.
DISCLAIMER: First, I am not a doctor, a nurse, anything having to do with the medical field. I am a regular guy who wants to help you understand, because we had the same questions you likely have today.
WHAT IS PFVS? Basically, PFVS is a condition in the structure of the eye that causes the eye to be susceptible to cataracts, detached retina, etc. It is typically a condition that afflicts BOTH eyes at the same time, statistically speaking, of course. When the surgeon examined Joshua's eyes, he commented that this condition could be the case. As if my heart wasn't already crushed with news of the detached retina, he dropped a ton of bricks on it when he explained the possibility of PFVS.
When I heard "bi-lateral", I literally almost fainted in the exam room. My skin got cold and clammy, and my head started to spin. I didn't hear another word the surgeon said for about the next 5 minutes until I could get out the room and compose myself. My world, so I imagined, was caving in on me. Was I scared? Hell yes, I was scared! There's no better way to say it. I thought, "Blind? My son? God, why my son? Take my eyes! He doesn't deserve this; I do!"
As time progressed, and as a steady stream of heavy tears flowed, I grew to accept the notion that this could be my son. It truly broke my heart. We found a couple blogs that explained this condition indeed affected both eyes of their children, rendering them legally blind. I prayed earnestly for God to heal my son, to spare his vision. I couldn't imagine my boy no longer being able to see God's beautiful world. But as my wife so astutely pointed out, "Michael, maybe God HAS already healed Joshua by limiting this condition to just one eye rather than both." Statistics aren't ALWAYS 100% accurate. They are merely typical projections.
So, let's get into the nitty-gritty.
WHAT IS A VITRECTOMY? The long-short of it is this: a vitrectomy is the removal of the vitreous fluid contained within the eyeball so a surgeon can perform a particular surgery. Otherwise, if the fluid remained in the eye s/he would not be able to perform the surgery. From what we've discovered, a vitrectomy is performed any time the retina detaches itself from the eyeball (either partial or full).
The surgery team will fully anesthetize your child. If this is your child's first surgery, then there's no telling what to expect. Our son was very combative and fearful. We always did our best to reassure him, but his emotions were perfectly normal. Your child's reaction will depend largely on his/her history of medical intervention and overall demeanor. I truly wish you the best.
A FEW DAYS BEFORE SURGERY - BLOOD SAMPLE ENZYME: The surgeon will likely require a blood sample from the birth mother or the child-patient. This is medically intriguing! See, the vitreous fluid is very gummy and sticks to the retina. Should the surgeon remove the vitreous fluid without treating it, s/he would likely damage the retina further because it is stuck to the vitreous fluid.
So, they will use the blood sample to remove a particular enzyme that they will inject into the eye about 30 minutes prior to the vitrectomy. This enzyme acts as a solvent of sorts and causes the vitreous fluid to "let go" of the retina, which is simply a very thin "film" on the inner eyeball. Whoever discovered that method is a pure genius!
Once the enzyme has done its job of separating the vitreous fluid from the retina, the surgeon will have full, unobstructed access to the inner eyeball. Our surgeon, Dr. Michael Trese (pronounced Tracey) at Beaumont Hospital in Royal Oak, MI was superb. He used a laser to conduct the rest of his business, rather than other more complex and archaic methods to repair the eye.
SCAR TISSUE: With full access to the retina, the surgeon will be able to ascertain what led to the retinal separation. Damage could have been due to a direct-impact to the eyeball, or it could have been a defect from birth. In either case, s/he will look carefully for scar tissue on the detached portion of the retina.
Here's the best way I can describe the scar tissue. Imagine removing a sticker from the factory sticker paper. The sticker is never as sticky as it was when it was first applied to that sticker paper. When it is removed from that sticker paper, the sticker is immediately attacked by dust and air molecules that render it progressively less sticky. Now imagine sticking that sticker to a shirt. It's still sticky, so it adheres pretty well to the shirt. Now, remove the sticker and look at the sticky side. What do you see? Right, a ton of lint and fuzz. Now try sticking that sticker back on the factory paper. It's just not the same as when you originally peeled it from the sticker paper.
By analogy, the sticker paper is the eyeball, the sticker is the retina, and the lint is the scar tissue. The retina is a very thin "film" that attaches to the inside of the eyeball. Hopefully the sticker analogy give you a better idea. Well, all of the scar tissue has to be removed before the surgeon can even try to re-apply the retina to the eyeball. Once all that scar tissue is removed, the surgeon can begin his/her efforts to re-attach the retina to the eyeball using laser technology.
HEAVY LIQUID, GAS BUBBLE, OR OIL: Once the retina is attached, the surgeon inserts a new liquid into the eyeball, replacing the vitreous fluid God put in the eye that had to be removed. I asked why the God-given vitreous fluid couldn't be put back in, and our surgeon simply chuckled, "Because that's not how it's done." Oops. Sorry.
Instead, the surgeon will inject the eye with any combination of a "heavy liquid" (I couldn't tell you the technical term) and/or a gas bubble. I'm not quite sure what determines the method, but the function is all the same. The heavy liquid sits on the bottom of the eye, resting on top of the retina and hopefully keeping it pressed firmly against the eyeball. The gas bubble does exactly the same, but it being gas rises and pushes the retina firmly to the top of the eyeball. If the surgeon doesn't use either or both of these options, s/he will use a silicone oil, completely filling the eye. Our son has an implanted lens due to the removal of the God-given lens that was obscured by the cataract. Therefore, the heavy liquid and gas bubble technique was used, rather than the silicone oil.
POST-OP: Let me just say this...pray that you have good nursing staff for post-op care. When your kiddo emerges, it's hard to tell what kind of monster you may encounter. We've found it most helpful to be allowed into the recovery room while our son was still "asleep". That way when he awakened we would be the first people he saw, and not strange doctors in white coats. Doctors and nurses have their roles, but moms are always most comforting to scared kids. ALWAYS!
R&R: All the information we had ever come across said our child would have to remain still and as upright as possible for 2 days or so. Our active, full-throttle 7-year old was instructed to sleep, sit, relax, everything with an upright posture for 2 weeks. 2 WEEKS! I told him he needed to have the mentality of a fat, lazy kid...sit on the sofa, watch TV all day, read books, and do nothing. It was miserable. He couldn't sleep; we couldn't sleep; he was grumpy; we were grumpy; he was bored; we were bored. Just be forewarned and prepared -- this part is not easy, but it's a mere blip on the radar. You can do it! Just be patient and remember your little one needs you to be strong and courageous.
2ND SURGERY: We were told that a second surgery, about 2 weeks following the first vitrectomy, would need to be performed. The purpose of this 2nd surgery was to remove the heavy liquid and gas bubble that was injected during the 1st surgery. A more permanent silicone oil was injected this time. In our son's situation, the implanted lens could not withstand the chemical make-up of the heavy liquid, so it was only a temporary attempt to press the retina to the eyeball. The oil is intended to be much more permanent.
CHAPTER 2: Following the 2nd surgery, we were told the retina did not affix properly to the eye after the 1st surgery. In my next chapter, I will discuss the real crisis of faith and life after an unsuccessful attempt to attach the retina...
Click here for chapter 2.