A TinySuperhero’s story from a Super Mom’s perspective:
Our journey began in November of 2016. Aiden had complained about his eyes hurting him and his vision being blurry. So we took a trip to the local emergency room. They did a few tests and told me he had a sinus infection which was creating sinus pressure. This was what was causing the discomfort in his eyes. After a few days go by, Aiden finishes up his antibiotics, but he is still complaining of pain and “blurry eyes.”
My mother’s intuition…. something isn’t right here.
So, we take a trip to the ophthalmologist. The doctor ran some tests- the usual vision test where he shines a light in his eyes and so on. He then turns to me with such a serious look on his face. He proceeds to tell me, ‘Ma’am, you need to get your son to a medical facility equipped to handle this. My diagnosis for him is he is legally blind.’ Terror shot through my body. I held back the tears. How could this even begin to be right? There’s no way.
The doctor went on to say he was calling ahead to a hospital with an amazing pediatric unit. That they would be expecting us. We made the 3.5 hour trip to Ruby Memorial hospital. We got checked in and they immediately started running tests on Aiden. Blood work, eye screenings, urine samples… You name it. We were there several hours when the nurse admitted us to our room. There were so many doctors in and out of our room. Ophthalmologists and neurologists were the most common. They ran every test possible and seemed to be running out of options. That’s when one of the nurses came in and said the final test would be a lumbar puncture- more commonly known as a spinal tap. Those words together just sound terrifying.
I had to hold it together for my baby as we made our way to the pre-op room. Aiden had never been put under anesthesia, so I was so scared for him. His father and I went back with him. The anesthesiologist told him to sing ‘Twinkle Twinkle Little Star.’ He began to sing along with us. His eyes rolled back into his head, and he seized up. They reassured me it was normal and not to worry. We were taken to the waiting room where time seemed to drag on so slowly. The minutes felt like an eternity. Finally, the door swung open, and they told us we could come back and see him. He was still groggy and out of it. The nurses asked him to get up and walk around the room. He kept saying, “Ouch. It hurts. My back hurts Mommy.” My heart broke for him once again. We were told it would be several days before the test results came back from the spinal tap.
The next morning one of the nurses entered to check his IV and give him more steroids and other medications. Her name was Nurse Abby, and she had been a god-send to us during this difficult time. Aiden opened his eyes and said “I can see you! I can see you Nurse Abby!” My heart felt like it was going to burst from my chest! His vision had came back. I felt such a relief come over me. My baby could see again! It was one of the happiest moments of our lives.
But we still had so many questions. What caused this? What would the future hold for Aiden? We would get those answers the following day. The pediatric neurologist and pediatric ophthalmologist came into the room the next afternoon. They told us the test results came back for the spinal tap, and everything looked good. But one of the blood tests results would hold the answer we had been waiting for. The doctor proceeded to tell us that he had only seen one other case like this in his 42 years of experience. What Aiden had experienced was so rare in children. He was diagnosed with Pediatric Optic Neuritis with Papilledema caused by the Bartonella henselae bacteria. Otherwise known as Cat scratch fever.
Let me break this down in easier terms. He had experienced loss of vision because he had a bacterial infection. The bacteria had gotten into his bloodstream. It then attacked the optic nerves. Causing him to go completely blind. In the United States there are around 100,000 cases each year. But generally only 1-5 are found in children. 0.2 children per 100,000 cases. Children make up 5% of these cases. The doctors were so shocked. It all made sense though as to why it was so difficult to get answers. We found out that Pediatric Optic Neuritis is an inflammation of the optic nerves in one or both of the eyes. In Aiden’s case both were affected. The main symptom of this is dramatically decreased vision or complete loss of vision. Thankfully, Aiden regained his eyesight as blindness can become permanent in some cases. We were about to find out even more news as well. Aiden now had Deuteranopia. Which meant he was now color deficient. Otherwise known to many as colorblindness. Several appointments later we have concluded that Aiden is Red/Green color deficient. He has trouble seeing certain colors, shades and brightness correctly. Mostly red, green, blue and yellow. He also faces the chance of having Multiple Sclerosis in his future due to the Optic Neuritis. Within the next 10 years, his chances will increase to 38% of him developing it. Which, of course, is scary to think. There’s also a small percentage that he will go blind again in the future, but that’s uncertain. He does have scarring and damage to his optic nerves which cause him problems with his eyes from time to time. We are just thankful for the outcome we have.
Aiden knows the road ahead isn’t going to always be easy. He will have bumps along the way and face obstacles as he grows up. Even throughout all of this, he has managed to continue to be a happy child. He always maintains a positive outlook on life and enjoys each and every day to the fullest. I know without a doubt he is stronger than I will ever be. He has been through so much at such a young age. But he didn’t let that bring him down. He is the bravest little boy that I know. In my eyes he is truly a SUPERHERO.