new mom looking for answers

March 4, 2007

My 5 month old son was just diagnosed with BPES. There is no

history on either side and this is our first child. We had never

heard of this condition, all we knew was he didn't open his eyes

very wide. His pediatrician referred us to a local ophthalmologist,

who explained his findings and recommended surgery. I'm sure many

of you can relate to the devastation and fear that we are going

through. The more information I find, the more questions I have.

I'm trying to stay positive but so far the past 3 days have been

very tough. We have spent the past 5 months feeling so blessed,

taking hundreds of pictures, and just being so happy. I feel like

that was all taken away from me in the blink of an eye. I certainly

don't enjoy him any less but all I can think of now is the hardships

he will endure and I feel so helpless. It has been a rollercoaster

ride. I have been finding info and looking at pictures that both

encourage me, and scare me. There seems to be such a difference in

individual results. The ophthalmologist we are seeing recommends

doing surgery in the next couple months because his vision does not

seem to have been affected yet. He was open about the fact that the

procedure may have to be repeated. He explained the frontal sling

procedure by saying he would make 3 incesions above his brow. I've

also seen this done using the forehead for attatchment. Can anyone

explain the benefits of either way? It's also been recommended that

we close the space between his eyes using the y to v procedure and

that we might as well do that at the same time. It seems that not

many people opt to do this so young. They say it's an easy

procedure and the surgeon has done between 100-125. The surgery

seems to be such an art. If anyone has a surgeon they swore by, I

would travel the world to give him the very best.

Any advice would be greatly appreciated.

Recommended Posts