Advice re Surgery options

[Guest guest]

Our 3 month old son, Tyler, was recently diagnosed with BPES. We have been

referred to a

surgeon who has recommended the following:

1. At 10 months - insertion of silastic bands to lift lids and temporarily

correct ptosis,

2. At approx 3/4 years - surgery to correct the blepharophimosis and epicanthus

inversus,

and

3. At approx 4/5 years - permanent correction of ptosis.

I have been reading through the group messages and see that whilst surgical

intervention

seems to be the most common action taken by parents / patients, there are a

number of

parents who have decided against surgery, for various reasons.

Although we plan to seriously consider any recommendations made by our surgeon

and

health professionals, we would great appreciate other families opinions on

whether

surgery was the best way to go. Like all parents, we think our son is perfect

and beautiful

just as he is, but we want to ensure that we are providing what is best for him.

As far as we know to date, Tyler's development and vision have not been impaired

so I

question whether the first surgery (silastic bands for lid lift) is completely

necessary or if

we should perhaps consider waiting for the permanent lift, for the purpose of

minimising

his discomfort (and ours!).

We have been advised that the temporary lift is usually recommended so that the

child is

not lifting their chin and tilting their head back to see. Such lifting, we are

told, can cause

delayed development with crawling and walking and cause problems with the

child's neck

and shoulders. I am interested to see that I have not seen any mention of this

problem

posted on this forum from the parents who decided against surgery. Is this a

real problem

for most BPES babies / toddlers or not?

We realise every child and every experience is different but some advice from

those who

have been there would be fantastic.

Also, if there are any other families out there from Australia we would love to

hear from

you as we have not yet had contact from any other parents or children.

Robyn Fortune

Perth, Australia