Thank you for giving me the opportunity to share my sons story on being diagnosed Keratoconus blog. It is my hope that I can raise awareness about Keratoconus and crosslinking.
Our world was turned upside down when our 12 year old son, Taber, was diagnosed with Keratoconus this past October. Before we get into that, let me start at the beginning so you have a full understanding of shear determination.
Taber came to us when he was 2 days old through the DCF Foster Care system. He is the biological brother of our son, who we had fostered and adopted two years earlier. When he was 6 months old, Taber began having seizures. At one point, he was having well over a hundred seizures a day. Eventually, Taber was diagnosed with Epilepsy. Because of having so many seizures, his development, both physically and mentally, had become severely delayed. We had Birth To Three services coming to our house 3x a week, visiting nurses and numerous specialists and doctors visits. At one point one of his doctors expressed to us that because of Taber’s seizures and physical and developmental delays, he may never walk or talk. Even our DCF worker asked us if we still wanted to proceed with adopting him because of all the special care he required and the uncertainty of his future. Of course we said YES!!! We love him. Taber proceeded to defy all odds and beyond.
This past September Taber entered the 7th grade. By October, his teachers began noticing that he was having trouble seeing in the classroom and advised me to get his eyes checked. I couldn’t understand how he could be having trouble seeing when he could point out makes and models of cars far off in the distance and seemed to have no trouble seeing a baseball to hit or shoot a basketball. I made an appointment to get his eyes examined. I figured, worse comes to worse, he’ll get a pair of glasses and that will be the end.
The doctor began examining Taber’s eyes and right away noticed something unusual. Our routine eye exam quickly turned into an over 2 1/2 hour long appointment. Once finished, calmly she said Taber’s vision was severely limited. “He’s not blind”, she said, he has approximately 20% vision remaining in his left eye and his right eye is slightly compromised as well. She recommended that we see a specialist and find out why his vision was deteriorating and get some answers. A little shell shocked, I made the appointment with a very good doctor who specializes in children’s eye care. Within a couple of weeks, we were off to the doctor’s once again. To my surprise, the doctor could not complete the eye exam. Taber’s cornea was irregularly shaped and she could not see it clearly, something said she had not seen in years. She referred me to a cornea specialist and another appointment was made.
As each appointment was made, I was becoming more and more concerned. What had happened to just getting a pair of glasses after all? It not only was effecting myself, but Taber as well. He was becoming more anxious with every doctor's visit. I made the appointment and we headed to a very well known cornea specialist in a large teaching hospital in our area. It was here that we received the diagnosis, Taber had Keractoconus. A rare eye disease, we had never heard of, that was essentially stealing Taber’s vision away.
She explained in order to stop the progression of the disease he could have a procedure called Cross-linking which had just recently approved in the US and going through clinical studies. Or. the only other option was a cornea transplant at some point. After talking to the Doctor, it was agreed that the best option was to proceed with Cross-linking and hopefully stop the disease.
I called the few doctor’s in the surrounding area that did the Cross-linking and asked questions about Keractoconus and the procedure. I gathered as much information as I could and made an appointment with one of the doctors that had participated in the clinical trials. After more eye exams and testing he advised us to move ahead with Cross-linking and recommended a time frame of 4 -8 weeks because of the rapid progression. We went home, digested the information, and scheduled the surgery.
To our disappointment, the surgery could not be done the first time due to complications in sedating Taber. He became very anxious and they could not complete the surgery. After much searching, we found a wonderful doctor in Boston at Massachusetts Eye and Ear Hospital. We went there for a consultation so they could meet Taber. They were wonderful from the moment we stepped into the office. The staff was knowledgeable, patient and willing to do all that they could for Taber. They even gave him a book that they had made with pictures and explanations of what was going to be happening the day of his procedure so he would know what to expect. This made Taber very comfortable with all of them. We scheduled the surgery and came back a few weeks later to have it.
The day of the surgery was like any other day. Taber went to school for a few hours. We picked him up early and headed to Boston. On the way there, we gave him a medication to help relieve some of his anxiety. Once there, they talked and prepared Taber for the surgery. From there, they put anesthesia drops in his eyes to numb them and brought him to the surgical room. Once settled and comfortable, they started applying the series of Riboflavin drops to build up the thickness of both his corneas.
Thankfully, Taber was comfortable and slept during this entire process. Once the optimum thickness was achieved in both eyes, which took awhile due to his left eye being so advanced, his cornea was extremely thin and scarred. He was then placed under a UV light. This is the hardest part of the surgery. He has to lay perfectly still and look directly at the UV light for 30 minutes. Imagine, being that close to the sun and staring at it for 30 minutes. It burns. The little glowing red circle in the picture is Taber’s cornea and the UV light penetrating it. He did this part with hardly any anesthesia. 5 1/2 hours later and a completely dedicated office, staff and doctor the surgery was complete. Taber, literally, ran to the car when he was finished.
The next day, Taber had a post operative appointment. He did one more test where they numb his eyes and paint both of his corneas with an orange solution. He looks into a machine that lights up the area blue to see if all the gaps are filled and any sign of infection. Thankfully it all looked good.
His recovery went well. He had very little pain the first few days. The first week, we put drops in his eyes to prevent infection and keep them moist. He wore sunglasses when outside, a night shield when he slept and no rubbing his eyes. We will continue with follow up appointments to track his progress.
This entire time, Taber never once let Keratoconus stop him or defeat him. This past Fall he tried out and made his Middle School basketball team, once again, defeating the odds. And even though he was having medical issues, he was determined to finish the season. He continued to do great in school. all with a smile on his face. He even took up a new sport, Golf. Taber’s shear joy and determination in everything that he tackles is inspiring not only to us, but to his friends, school and community as well. This disease will not and has not stopped Taber. If anyone can figure out away around this, it’s Taber. He has done it with everything else and every other obstacle that has been placed in his way. Why should this be any different.
If there is one thing that I can pass on to every parent and/or care giver, have your child’s vision checked yearly. Ask for your child to have cornea mapping. This one test will give you a baseline of the cornea. With yearly follow ups, this will show any changes in the cornea that could lead to Keratoconus. It’s simple and easy. Just do it!
Again, thank you so much for this opportunity and for creating this space. My family and I found it very helpful for information when Taber was first diagnosed and continue to.