The Early Months

Thomas had his first eye surgery when he was two-weeks-old. When we left the hospital after the infection check, we left with an appointment to come back for another surgery in a month.

For us, every surgery was an opportunity to establish some vision for Thomas. Dr. Capone is one of the few surgeons who will work on eyes like Thomas'. Unfortunately, some doctors don't think it's worth it to do the surgery because the visual outcomes are not "good."

Well I think if you can establish light perception for a child that is good! A child with light perception can use that to help navigate their world. They can recognize that certain lights in their house are a door or a window and use them for orientation. I think that is well worth the effort for all parties.

Thomas can even follow objects that are very close. His visual field is about six inches from his face. I have seen him grab a toy or a pacifier with amazing accuracy. It will be interesting to see what kind of visual abilities he has someday. But I will never regret those surgeries.

Thomas' second surgery was on his left eye which is his more difficult eye. Thomas also has microphthalmia of the left eye meaning it is smaller than it should be. As with every surgery, Thomas' eyes were examined under anesthesia, then a brief conference with the surgeon, and finally the surgery was performed. We made each trip to Detroit knowing that the surgeon might decide that he couldn't help Thomas further and no surgery would be done.

We were cautiously optimistic about the second surgery but happy with the progress he noted when he examined the right eye. We were again scheduled to come back in six weeks for a second surgery on the left eye, to see if more progress could be made. There was a lot more scar tissue in this eye and the small size of the eye made things more difficult.

This picture was taken the day Thomas got his contact lens.

In January of 2010, Thomas got his first contact lens. This was amazing to me. I was so afraid of it because I was originally told I would have to take the contact in and out myself. Now a trained physician needs a lid speculum and numbing drops to get Tom's contact lens in. What chance would I have?

Luckily, they decided that we would leave it to the professionals. If the contact came out we were to go have Thomas' pediatric ophthalmologist put it back in. We were lucky that the physician who first examined Thomas has been available to be his doctor. She knows our whole story and has been amazing. We have been very luck to have a team of caring professionals for Thomas. I know that not everyone is so lucky.

We noticed an immediate change in Thomas after getting the contact lens. His own lenses were removed during the surgeries and without a lens (this is called being aphakic) the eye cannot focus on anything. His eye just used to sort of roll around. With the contact his eye was looking straight ahead! The difference was so noticeable and very exciting to us.

After the February 2010 surgery

A routine retina exam in late January told us that there was a problem in the right eye and that we should contact our surgeon ASAP to see if they could fit us in.

This was heartbreaking because that was our good eye and we had such hope after the last surgery. So we immediately called Dr. Capone's office and they fit us in for the next week. Tom ended up having a second vitrectomy in his right eye in February of 2010.

We came back again in March for a third vitrectomy of the left eye and were given a picture of Tom's retina by the surgeon. In the right eye he had been able to clear almost all of the scar tissue and about 80% of the retina attached.

It was amazing news! We couldn't stop looking at that picture. I kept a picture of it on my phone to show people and it's still on my refrigerator at home.

We were never able to reach the same level of success in the left eye. After three vitrectomy surgeries a small portion of the retina is attached and there is a small area in the scar tissue he can see out of.

We estimate that he has at least light perception in the left eye. In visual testing done at the Western Pennsylvania School for Blind Children he reacted to colored flashlights on the left side.

The day Thomas got his left contact

We went back to Detroit in June 2010, for another examination under anesthesia but they decided that further surgery would not help Thomas at that time. They also discovered that Thomas had developed glaucoma and put him on a eye drop called Cosopt. He eventually went on Xalatan eye drops but his pressure remained very high so he was scheduled for surgery.

Thomas had two glaucoma surgeries (Baerveldt and an Ahmed glaucoma valve implants) this spring and we will soon go in for an exam under anesthesia here in Pittsburgh to check his eye pressure. Thomas is not on any medications for the first time in almost a year!!!