Waiting with surgery?

January 13, 2007

Hello, my name is Sheryl. My wonderful 18 month old son, Hayden has BPES.

When he was born it didn't take more than a day for us to wonder if his

little eyes were " normal " or if we should be concerned. He was so cute and

so healthy but he seemed to keep his eyes closed a lot the first few days,

(compared to our daughter), so we mentioning it to our midwife. She didn't

have any answers and didn't want to worry us so she sent a note for our

family doctor to look into it.

This began our journey - the comments started coming from friends, relatives

and even strangers and after a few months, a bit of shock, a lot of fear and

many appointments with doctors, specialists, and a geneticist we found out

that our son had BPES. Surprisingly it was a relief to find out it was a

physical condition as opposed to a mental one, (the word Syndrome sounded so

daunting and seemed to have such big implications)!

After being referred to an Optomologist we were informed that Hayden will

need sling surgery at 3.5 years to lift his lids. The sling will be

harvested from his leg so the wait is to let his leg grow long enough to

produce the necessary length.

Since joining this group I have been reading your emails to each other and

just am wondering why some of your children have surgery earlier? I find it

hard to have faith in our doctors decision to wait. I don't want Hayden's

eyes to stop functioning normally. Right now he is functioning at a normal

18 month level and seemingly hasn't been hindered by his little eyes. Though

the doctor has done many such surgeries and I do trust his professional

opinion I just need to know that he will do the best for my son - this is

his face and potentially his eyesight! I would love to hear why the earlier

surgeries are happening!

Thanks for all the encouragement I have received in your emails. It is great

NOT to be alone on this BPES road. I know that my questions have already

been asked and answered and what I have been through has probably also

happened to you.

God sent me " my little sunshine, " his wonderful attitude and constant smile.

He's just the sweetest little guy. I find I spend so much time worrying that

he won't be accepted but he wins hearts all by himself!

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