Steve and Beth Bounds have 2 precious girls, Carrie and Tori. Tori is their youngest and was diagnosed with Microphthalmia with a large cyst in the left eye, and Coloboma of the right eye.Beth coordinates our bi-monthly web chats. They live in Columbia, Maryland (USA).
Beth tells their story of Tori's initial diagnosis, and her miraclous success of sight. Please read on.............
Victoria (Tori) was born 1/6/97. We brought her home as a healthy baby girl. Before her first two week pediatrician appt. my husband, Steve, and I noticed that her left eye was swollen and the color of the eye was different.
The morning of the pediatrician appointment, my husband went to work as normal. The pediatrician looked at the eyes and said 'I believe the ophthalmologist should look at her'...She said 'I will go schedule the appointment now.' She told me not to worry.
I got into the car and called my husband from the cell phone. The ophthalmology appointment was that afternoon!
My husband and I went to the ophthalmologist's office. He said there was problems with the size of the eyes, the optic nerves were affected, and BOTH eyes are involved.
We asked CAN SHE SEE?
He said he did not know and avoided the question further. Another doctor came into the room and said the same thing except he referred us to a pediatric ophthalmologist who specialized in neuro-ophthalmology. At that moment, our pediatrician, walked
into the office to see how we were doing. NOT WELL! She walked us to her office and called the P.O. The soonest appointment was be three days later.
I could not believe it. My daughter could be blind. I had not
anticipated that there were problems with both eyes. The P.O. was calm when he gave us the diagnosis. The left eye has Microphthalmia with a large cyst. The cyst
was around the optic nerve. The right eye had a large coloboma affecting the optic nerve. He indicated he was uncertain if she would be able to see but said there was hope. He said, "infants are amazing and we are never fully able to determine the extent of vision at this age. Give it time."
We walked out of his office feeling somewhat better, at least we had some hope. He suggested we see a geneticist, neurologist (expect a MRI) and an endocrinologist. The good news was that all of Tori's other specialists indicated things were normal. There is a translocated chromosome present, in Tori, that is not present in my husband or myself.
The depressing news was that the cyst was growing in the left eye and was protruding forward even more. It looked terrible.
Surgery was done to remove the cyst, when Tori was 10 months old, by an Ocular Plastic Surgeon. She stayed one night in the hospital. 95% of the cyst
was removed. The surgeon told us that the eye was very small and for her to get a prosthesis soon.
At the 1 week follow up appointment the surgeon was surprised the eye did not fall far back into the socket. She was opening up her eye and it looked GOOD. Steve and I were thrilled maybe she won't need prosthesis. The eye almost looked normal. The surgeon said we would not know for sure for another 6 months. We were told she had no functional vision in this left eye.
Unfortunately cerebral fluid is filling the space left by the golf ball size cyst. The surgeon informed us that another surgery
would be necessary but we could wait and make the decision based on her bone structure. The eye is protruding a little again and the facial structure is beginning to look different. He indicated we should go into this surgery expecting her to loose the eye. We see the surgeon again in August and believe the surgery will be soon afterwards.
Steve and I are doing as much research as we can about Tori's
condition. I have talked so much about the medical part I have neglected to indicate how Tori is doing. *Smille* She is able to see out of the right eye. It appears her depth perception and her field of vision is affected. She has a great smileand determination. She walks, runs, and tries to keep up with her 4 yr. old sister. She is developmentally on target.
The local Infant & Toddler Program follow her. She receives 2
hours of vision therapy and 2hrs of orientation & mobility training a month.
In closing Tori can do so much more than we originally expected. She still has a lot to overcome but she is very strong willed. This has changed my family's priorities but we would not change it for the world.
There are a few different ways to contact Beth or Steve. Try through theirPersonal ICQ page, or by regular e-mail.
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