Featured Family Stories
Our first son was diagnosed with Congenital Glaucoma on July 27, 2006, his mother’s birthday; he was only 3 months old. We were completely caught by surprise with this diagnosis. Early that morning he had seemed to be under the weather and was really fussy. He went down for a nap on July 27, 2006, and when he woke up and opened his eyes – his beautiful blue eyes had turned cloudy and white. Looking back we realize that he did not open his eyes much in the days leading up to that "event." That day was the day that changed our lives forever.
When we met our wonderful surgeon he told us something we will never forget "It is a marathon not a sprint." He was exactly right. Christopher is, now, five years old. During the first few years of his life he had over 30 procedures under anesthesia (a combination of goinotomies, trabeculectomies, valves, pressure checks, EUA’s, etc.) Until, finally, he was able to cooperate at the doctor’s office. He has been able to complete pressure readings in the office since he was three years old because his surgeon and us worked very hard with him to encourage him to do so. It took time, effort, and a lot of bribery but it all paid off in the end since we didn’t have to go to the hospital for pressure readings any more. He was also evaluated for glasses under anesthesia when he was really young. He has worn glasses since he was around 8 months old. Before he was one years old he had three goinotomoies in each eye for a total of 6. He took drops following these procedures to control the pressures in both eyes. When he was two years old his right eye began to experience increased pressure, once again and he had a trabeculectomy on his right eye at that time. This procedure along with pressure drops was successful for about three years, until, this past summer when he had to have a valve implanted in his right eye. He is currently taking pressure drops in both eyes and has had stable pressures in both eyes for almost a year now. He, also, has ambloypia and a cataract in his left eye as a result of his glaucoma.
It was extremely hard for us in the beginning because we didn’t have a clue what to expect. The disease dealt with us and we didn’t have a clue how to handle that or cope with it. The toughest part is not knowing what will happen down the road, but today we can say that our son is a happy child and he can see! He may not have perfect vision but he is able to function very well at this point.
When our second son was born he was seen by our glaucoma doctor right away and to our pleasure he did not have glaucoma. However, tragedy struck again when our third son was born. We knew the signs to look for and, unfortunately, we realized very quickly something wasn’t right. We now have two children with congenital glaucoma. Our youngest son is currently 7 months old. He has had 2 goinotomies in one eye and three in the other and he has not needed pressure drops as of yet. He is very light sensitive, but so was his brother in the beginning. As he got older the light sensitivity seemed to diminish quite a bit.
We are still running the marathon and have learned many things along the way. One of the more important things we have learned is that only time will tell what will happen tomorrow, so we have to stop letting the worry consume us. Today, we have two boys with glaucoma that are stable and are able to see the world around them thanks to our great doctor and our persistence with following through with treatments. Life is getting better. Our children are happy, we are hopeful, and our life (after taking a ride through a tornado for 5 years) is finally – calm. We are optimistic again. We deal with the disease – instead of letting it deal with us.
