Re: BPES destiny....

[Guest guest]

Well Said,

Tim ,

father of Aedan the Great. New York NY

In a message dated 1/24/2009 7:36:00 P.M. Eastern Standard Time, giro.martino@... writes:

My dear "BPES fellows",I hesitated before writing about the interesting debate ongoing in our site. But eventually I decided to intervene because I'm convinced that free and respectful circulation of ideas is no doubt better than a….noisy silence !The raised question about considering termination of pregnancy as a mean to avoid the birth of a daughter potentially infertile is not a simple one.I've BPES but I didn't know to have it since the day I started to work with a famous Italian geneticist who, after he told me "Hello, welcome in our staff" added "You have BPES and the 50% of your offspring will inherit it. There is one type of BPES that is associated with premature ovarian failure" ! Before that "standing diagnosis", I simply knew to have "small eyes" or "Chinese-like eyes" ! Fortunately, I never had sight impairment (my parents, as my sight was good, never consulted an ophthalmologist !) and in my youth age aesthetical concern was not an important one. When I was a kid I had probably suffered from my schoolmates mockery but now if I look back I can see how wonderful and successful has been my life compared to that of most of them !Before I got married I explained to my wife-to-be (a very nice uptown girl who felt in love with a BPES !) what was BPES and the risk to have the infertility-associated type; well, the idea that we could have felt guilty, in the future, if an infertile daughter were born fortunately never crossed our mind ! Nor crossed our mind the idea that "no kids" could be better than "BPES kids" !Human fertility, compared to animal fertility, is very low and is increasingly lower; as someone already said in this group, there are lot of causes of infertility, congenital or acquired in postnatal life: we can state, then, that a couple can be sure of being fertile only with …a baby in arm !Therefore, could we deny the chance to live an otherwise wonderful life to a human being simply because she is at potential risk of infertility ? Or, worse, would we sacrifice our BPES kids on the altar of present aesthetic standards ? Who are we to decide who can live and who can't ?The infertility associated to BPES is generally due to premature ovarian failure that means a fast consumption of the egg-containing ovarian follicles: in the near future, reproductive medicine will allow to easily collect and store eggs to be used later in the life for assisted reproduction techniques. I'm now 47 and I've two kids: a 5yrs old daughter, and a 3yrs old son affected by BPES (the "famous" 50% !). My son needs to wear glasses as he is astigmatic but his sight seems not to be so impaired to need surgery; as to aesthetic question we do love him as he is and we couldn't imagine him to be different ! Our task is to foster them in the best possible way reassuring him that his eyes' shape will not prevent him from having a satisfactory life ! When he will be in his teens, or later, only if he will ask we will consider surgery.I'm a doctor, obstetrician-gynecologist: each day I deal with infertile couples and I well know the great distress that haunt these couples. But we must remember that reproduction is only one aspect of our life (certainly, not the most important one) and our happiness can be looked for and found in many other ways and fields. Moreover, adoption is a great option to give a chance to unlucky kids otherwise abandoned to their sad destiny.With a big "Ciao" to all of you ! Girolamo o - Italy