Below is a letter from a young patients’ mother…
Dear all, my son lost his sight in his right eye and it may have been avoided. I know this is long, but please read this in the hopes of saving your children and selves the heartache my family went through.
There are two reasons I write this; I feel compelled to help all mom’s and families avoid the unnecessary pain we endured, even if it can help just one child, and two, to remind you that no matter how difficult a situation is, to never ever give up. You’ll see why at the end of this story.
At the age of 7, I noticed my son’s right eye turning in a bit (it was ever so slight) and it only happened once; I caught it right away. I did not panic because the school had just performed a vision exam a month before and the results came back 20/30, but something in my gut knew this wasn’t right. Since I had already scheduled an appointment with the eye doctor because of the 20/30 school results (I thought my son may need glasses like his father), I requested the office move the appointment up once I saw his eye cross.
At the office, they put the dilating drops in his eyes and that is when I panicked; his eye had no control. This was bad! In a blur, the pediatric ophthalmologist said that my son had an eye disease (Anisometropic Amblyopia & Strabismus) and because it went undetected for 7 years, his vision was lost and he was now legally blind in his right eye. The eye was now turning in because his brain was telling the eye to stop working (the brain was essentially ignoring the eye that didn’t work). The doctor then said to me it was probably late in the game to try to reverse it, but there was a chance by patching it. He ended the conversation with, “You know when you see a little toddler with a patch on their eye; they are the lucky ones. Their eyes crossed early enough for parents to notice and the patches then help to strengthen the eye and reverse damage. He was just unlucky that it didn’t cross until now at the age of 7.” I was stunned!
The pediatric ophthalmologist was swamped and the office was packed so this all happened in a matter of a few minutes and he was quickly out the door with apologies to come back in 6 weeks with a list of all my questions. W–? He was fine a month ago; how did this just happen? And, how was it even possible; his pediatrician had checked his eyes every year since birth with no issue, and the school had done vision exams every year since he was 3, which means he had a total of 10 eye exams in 7 years with no issues until the 20/30 results we just received from the school a month before; AND NOW HE WAS LEGALLY BLIND!
I was devastated! It took me 48 hours to recuperate, but then I was on a mission. I went to several doctors (pediatric ophthalmologists, a friend who was an eye surgeon, etc.) and also went for 2nd and 3rd opinions. I recruited everyone I knew to help; and help I got. Calls came in from people with connections to the best pediatric ophthalmologists, hospitals, and doctors in the northeast, and very shortly, I had my confirmation; he did have Anisometropic Amblyopia & Strabismus and somehow, despite his exams, the pediatrician and the school missed it!
I needed answers. When I spoke to the pediatrician, he at first seemed horrified, shocked and sorry. He promised to look into it as he could not explain how it happened or why it was missed. When we spoke the next time, the pediatrician was distant and matter of fact. He conveyed that my son must have cheated on the eye exams they performed in the office. I asked him how a 1 or 2 year old can cheat on an eye exam and his response was they fidget and wiggle and cheat (this pediatrician by the way came very highly recommended). “Let me get this straight I said, he is legally blind, but because he cheated, you missed it?” No response. I asked the pediatrician why their practice recommended seeing a dentist at an early age, but not a pediatric eye doctor and he said it was because they followed the recommendations of the AAP.
PAY ATTENTION HERE PARENTS: The American Academy of Pediatrics recommends in office exams and a referral if there is an abnormality, BUT, what if the doctor misses it. They missed it in my son.
And, note, that every doctor/practice has a different philosophy. I did my research and spoke to many pediatricians and surveyed many friends and the results varied; some pediatricians recommend going for a vision exam to the pediatric ophthalmologist, the same way they would recommend seeing a dentist. Others only recommend the dentist and rely on in-office vision screenings.
As for the school, when I called the nurse to tell her what had happened, she started crying; she was stunned and felt terribly guilty. I went in to the school the next morning and requested a meeting with the principal and nurse to find out how they screen and how this was missed; remember he was legally blind and got a 20/30 result. As the nurse shed tears and apologized profusely, she said that she was only one person in a school of 100’s of children and she admitted that she did not have the proper resources or adequate help or support to conduct tests sufficiently. This was all said before the principal made it to her office. When the principal walked I shared with her what the nurse had just conveyed and the principal adamantly disagreed with everything the nurse said. Shortly thereafter, the nurse was gone and replaced by two new nurses.
Getting to the moral of the story…
Every doctor gave us a different opinion on what to do with my son’s eye. Some said that it was too late and the brain was already shutting the eye down (they did not believe in brain plasticity the way I do). Other doctors insisted there could be a possibility of some improvement, even though it was late in the game, but my only option was to patch or put blurring drops in his good eye with the hope that maybe we can salvage some sight in the right eye. Other doctors said that if I did that to a 7 year old, it would be cruel and unjust and he would end up mentally unstable as that was torture; you can patch a toddler, they insisted, but not a 7 year old. With all of the conflicting information, I honestly had no idea what to do.
In the interim, I put in a call to the Commission for the Blind & Visually Impaired, as the school recommended we seek their guidance in how to best help my son. Although the gentleman (one of my earth angels) who ran the program said he could not help unless both eyes were compromised, he told me about a doctor who was doing extraordinary work in the field of vision loss and low vision and who was also conducting and publishing amazing studies in those same fields. He said I would probably have to wait a year to get in, but this doctor helped his family member immensely, was actually located in NJ, and it was worth a call. His name was Dr. Ronald Siwoff.
I called and made the appointment. The soonest appointment I could get was 10 months out. [Editor’s Note: This was before Siwoff Low Vision opened our new spacious offices. There is no longer a long waiting list.] I still had a decision to make about patching the eye or not and I did not know what to do. I experimented with patching my son’s eye for a few days. The results were disastrous; he now could not see in either eye for several hours a day with the patch, and he wept and pleaded for me to stop. It felt like I was torturing him and in my gut; it did not feel like the right thing to do.
So this is what I did; that night, after several days of patching, I surrendered it, and prayed. I prayed with every ounce of my soul. I am no holy roller, but after gathering all of the opinions and doing all of the research, I prayed all night long for guidance.
The next morning I woke up with a very strong feeling that I should call Dr. Siwoff’s office back. I spoke to his assistant, told him my dilemma of ‘to patch or not to patch’ and what all of the different doctors were telling us to do. I told him that I knew we had to wait 10 months, but I was at a loss and confused by all the conflicting doctor recommendations. He asked me to hold. I waited a long, long time. Then, Dr. Siwoff (another earth angel) got on the phone and asked me to repeat to him exactly what I told his assistant. He asked me what doctors we saw and what each of them said. I told him everything and his response was, “Be in my office on Tuesday (5 days away) and come during my lunch break. I’ll help you figure this out. Keep in mind that many people who go to see Dr. Siwoff have an emergency and many of the issues are dire. All of them [waited] a long time to get in to see him. Having been in his office many times throughout the years, I can attest to the fact that people come from many different states seeking his expertise. And now he was telling me to come in on his lunch break. Divine Intervention!
A few days later, my son was given a comprehensive 3 ½ hour exam; retested, diagnosed and prescribed prism glasses. Dr. Siwoff told me to not give up; he very strongly believed that the prism glasses would help. Incidentally, Dr. Siwoff also found through testing that my son had a severe form of dyslexia that affects the neuropathways of his brain (prism glasses may help remedy that as well).
Moral of the story……
- Don’t give up. My son has now regained 37.5% of the vision back in his right eye thanks to Dr. Siwoff and perseverance, and, it’s only been 3 years since we started. I believe that it will only get better as the years go by. Plus, with new technology, we continue to have hope. Keep pushing until the options or results feel intuitively right.
- “You can believe the diagnosis, not the prognosis” – Deepak Chopra
Doctors are human beings; not super human. They believe they are doing their best. I don’t think anything that happened was malicious, but you need to find what works for you. Don’t take no for an answer if it doesn’t sit well in your gut. Do your homework, research and inform yourself. Find a doctor you connect with. And know, that sometimes disastrous news can lead to blessings (yes, we had gotten the legally blind diagnosis, but that led to Dr. Siwoff who refused to give up, and who then also diagnosed my son with dyslexia which we may have never known about or it may have taken more years of suffering and angst to figure out). Perspective is crucial.