As Finn was close to turning two months old, the doctor’s visits and all the fear that came with them were back in full force.
On November 17th, 2017, a few days shy of his 2nd month in the world, Finn had his first surgery, a vitrectomy on his left eye. Dr. S opted to operate on the left eye first as he deemed it to have the most chance of achieving results. A reminder here that the results we were looking for were basically just light and dark perception. I’d be lying, though, if I didn’t admit that I was hoping for more. I thought for sure that since we had caught this so early and were operating so early, reattaching the retina would bring with it a slew of signals to the brain and some sort of vision in his eye. I knew deep down that this was not realistic. Dr. S has a very calming presence, but he does not serve up any bullshit or false hopes. He was straight with us from the very beginning – I remember him saying, “Finn’s case is extremely severe. Through surgery we have a shot at giving him something, but it is a long shot and only 50/50 that he’ll see just light.” So, I knew what the reality was, but I guess a mother never gives up hope.
My mom and stepdad came into town the night before to be with us during the surgery and recovery — I think more so for support for me than anything, as I was hanging on by a very thin thread. The five of us headed to TriStar Centennial Hospital in downtown Nashville in the early hours that morning. I think the worst part of the experience may have been the fact that I couldn’t feed Finn for 8 hours beforehand. As any parent knows, babies this age need to eat every few hours and they are sure to let you know when they are hungry. And what every parent also knows is, the worst feeling in the world is seeing your child distraught and in tears. Well, Finn was a champ for most of the morning, but by the time we got checked into the hospital he was very hungry and very distraught. I wanted so badly to ignore their orders and give my child what he wanted, what he needed, but I couldn’t. It broke my heart.
The anesthesiologist came in first to explain to us the process of putting Finn under general anesthesia. I was terrified. He was so small and so fragile. He weighed just 10 pounds. I knew that they did procedures like this every day on babies even younger and smaller than Finn, but this was MY baby. The thought of him lying there motionless on an operating table was horrifying. What if he didn’t wake up? What if he hadn’t gained enough weight to tolerate the anesthesia? What if? What if? What if? My mind raced.
Luckily the surgery is a quick one — only an hour and a half. But, I can tell you the wait felt much longer. We all took turns pacing the room and watching the clock. Finally, Dr. S came in to tell us that Finn was in recovery and had tolerated everything well. He said that technically the surgery went as expected. BUT. Yep, there was a big BUT hanging from the end of his sentence. BUT, what he was able to see during surgery was very discouraging and the eye was in worse shape than he thought. He knocked our odds of light perception down to very minimal – 20% at best. Defeated once again.
At this point I started to wonder if having the surgery was the right decision. Why had I just put my infant son through all of this for a minuscule chance of detecting a glimmer of light? Was it worth it? If he could make the choice himself, would he have had the surgery? For any other parents out there wondering the same things, all I can say is that we made the best decision with the information we had at the time. And personally, we did end up doing the second surgery on his right eye as well, knowing the odds were dismal. At the end of the day, we decided that we had to try everything we could for Finn, even if the statistics were not on our side. I never wanted him to grow up to ask us, “why didn’t you try everything you could to salvage my vision?” Knowing he wouldn’t remember any of it certainly helped. I tend to believe it was all much worse on us than it was on him. At least, I need to believe that.
We were able to bring Finn home the same day – he was sent home with a large patch over his eye and eye drops to prevent infection. I have to say, the recovery was not bad at all. He bounced back within a day and never seem bothered by the patch. He recovered much faster than his mother. He is our little trouper! From there, we had follow-up visits every week to make sure everything was healing properly and just had to wait to find out if the surgery would produce any vision. As Dr. S put it, “we’ll know if Finn can see anything if and when Finn lets us know.” For adults, it takes about 6 months for healing to complete and vision to be restored or apparent after a vitrectomy. For Finn, he predicted a bit longer, up to a year, and obviously we can’t ask him if he can see anything at this age so we would just need to watch for any visual reactions or focus. Another waiting game and a lot of unknowns. We scheduled the second surgery for two months later, but hadn’t fully decided at this point if we would go through with it or not. We had hoped that the genetic testing we were about to do would give us our diagnosis which then might help us make that decision.
10 days post-op, we had an appointment with a geneticist, we’ll call him Dr. G, at Vanderbilt Children’s Hospital. My assumption for this process was that Patrick and I could be tested to see if we were a carrier of any genetic disorders that cause blindness — I was happy to subject myself to any blood work, scans, family history questions, etc. My thinking was still: “let’s find out what he has so we can fix it!” Well, of course I was wrong and the procedure for this was to test Finn, not us. If Finn tested positive for any of the panel of genetic disorders they tested, we could then test the two of us to find out if we were the carrier. From there they could determine how likely it would be for any future children of ours to carry the gene and whether or not family members of ours should get tested.
So, the first step was more blood work for Finn and thus another excruciating doctor’s visit. Aside from the terror of watching him scream during the blood draw, it was during this appointment that we first heard the word Norrie’s Disease. I consider myself a pretty smart person for the most part, but genetics is WAY over my head. The simplest way I know how to describe it is that Dr. G thought that Finn most likely has a defective gene in the Norrie’s panel of genes which includes a spectrum of disorders. These disorders can run the gamut from exhibiting no symptoms at all, to the most severe being Norrie’s Disease which exhibits itself in total blindness, but often times deafness (a few years down the line), central nervous system problems, and developmental delays as well. Norrie’s Disease most often presents in male newborns at birth, another reason our fears began to escalate. FEVR and PFVS, the disorders already mentioned to us by Dr. S, were also on this spectrum of Norrie gene disorders, but usually with less broad and severe symptoms. We knew from Dr. S that Finn’s retinal detachments were on the severe end so we, along with our growing team of doctors, were certain that one of these would be our diagnosis. We were told that the tests could take 6-8 weeks to come back so from there we were back to waiting — waiting for the possible next surgery and waiting for a diagnosis to give us some answers.
This was a scary time – I remember crying daily and trying to stop myself from Googling too much. The few times I did Google Norrie’s Disease, I quickly closed the browser because I was too afraid of what I saw jumping out at me on just the results page. I was still grappling with coming to terms that my child might not see. I most certainly wasn’t ready to face the prospect that he might lose his hearing or nervous system functioning as well. It was all just too much and I was overwhelmed.
As I’d done successfully before, I decided to move back into a space of denial for a while. To enjoy the holidays with my son and to try to enjoy the remainder of my maternity leave before I had to head back to work at the start of the new year. Of course, what was supposed to be a typical maternity leave had been a true haze of doctors appointments, stress and panic. I really was a mess, but thankfully Patrick was my rock, and Finn was my salvation. Looking at his sweet little face, breastfeeding him, hearing his little noises was all it took to lift the cloud at any given moment. I didn’t know at that time if it was going to be ok, but I did know that I loved this little boy with every ounce of me, that I would do everything I could for him and that I would live my life trying to ensure his happiness and well-being the same way he was ensuring mine in those fragile days.
I think the bottom line I’ve learned in all of this for any parents going through any health or genetic issues with a child is that you may begin to mourn the loss of the life you expected for your child. I know I did. When pregnant, and seemingly with a completely healthy pregnancy, you begin to dream of who and what your child will become. You look to your own childhood, to the lives of your friends’ children or other kids you know. You think about the sports they might play, the schools they might go to, the career they might go into, the friends and partners they might bring home, the places they will travel. You envision the so-called “normal” life they will lead. And then in the blink of an eye, pun fully intended, it all comes crashing down. Of course I know now that facing a disability, disorder, or other diagnosis (with the exception of terminal or very severe illnesses and disorders, in which case I can’t possibly begin to understand what those parents must feel and face), this does not have to mean the end to all of those dreams. But, it does mean that your child will have a different path than the one you expected. A different path than the majority of other children their age. And, that, is a very tough pill to swallow because it is the unknown, and the unknown is a very scary place to be. My job from this point on was to swallow the tough pill. To accept the different path my son and we, as a family, were on. To arm myself and Finn with all the knowledge and tools we needed to create a happy, fruitful life for him. Simply put, it was time to get on with it!