Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hello! Thanks for your message. It is indeed what I meant by avoiding... We have met specialists in genetics, who have been working during 2 years on IVF treament to "choose" unaffected embryos, but the problem is that they hadn't enough "material" to work on, since my husband is the first one in his family having BPES... Since we knew it was the type related to female infertility, we really wanted to avoid transmitting it, and wanted to have this test before getting pregnant ... but now it seems that it's not possible to realize an IVF treatment for now... The geneticians have suggested us, to get naturally pregnant, and perform the test on the embryo (at 10 weeks), and taking then the decision to keep him/her once we know if (s)he is affected.... And the positive thing is that the cells of this embryo (affected or no), will be additional material to realize the IVF test.... which is a good news.... We think we will try this 2nd method (test while pregnant) and really hope we will be lucky! and for the 2nd baby (we dream about having 3... but we'll see :-) ), we hope to be able to have a IVF treatment... It is hard but I really don't want to transmit this to the future generations... I wouldn't be able to tell later to my future daughter we knew she wouldn't be able to have babies (or not after 20 years.. sth like this) and that we knew before getting pregnant that she had 50% chance to have it! All these reflections result for a long process...We have been followed by psychologists since the begin of the researchs (2 years ago) and now we are better and ready ! My husband told me about BPS from the beginning of our relationship. He had so much suffered from this when he was a child (having more than 10 surgeries, whose 2 of them were barely fatal because of infection...) and you parents know how children can be naughty with other children who are "different".... He has grown up with that, and is now stronger in his mind (he has studied medicine and is now a very human doctor) but he feels so guilty with that....now he knows he can transmit it... I think it would be very hard if we had a child with BPES... If it was only about the shapes of the eyes, taking such a decision would be more "esthetic" (even if it would be already hard for my husband... but I personally couldn't abord if it is was "only" that...) but with the early infertility problem, we think we must avoid it for our children... and the future generations... I wish you all the best with your Charlie and your future children. Thanks for your support, Astrid. De : talia.goodger <talia.goodger@...>À : blepharophimosis Envoyé le : Lundi, 29 Décembre 2008, 2h15mn 17sObjet : Re: Re : blepharophimosis testing Hi Astrid,I think we do know what you mean when you say you would like to 'avoid it'. Abortion is obviously a touchy subject and one that we will all never come to agreeement on - but it is an important one that should be discussed in forums like this one. I wish you all the luck in the world with your path that you choose to follow - it's amazing what science can do for us these days! Have you also investigated the possibility of IVF treatment in order to 'choose' unaffected embryos? This is something we have available in NZ - it may not be the case in all countries. On a personal note - Mike and I didn't have the information you have (the 50/50 chance info!)before our son Charlie was born and as no-one else in Mike's family had BPES we didn't think it was a pass-onable thing! But it was! We have had Mike's genes tested since then and his BPES is not the one related to female infertility so in many ways we were lucky. If it was, then I definitely would be doing IVF for any future children. But because there is no relation we don't plan to use technology to choose our future babies - mainly for Charlie's sake as I wouldn't ever want him to feel like he was a mistake in any way and have him wonder why we didn't try and do the same for him. Also, for Charlie, having a brother or sister with the same condition would only be a bonus. That's my two cents - I think you are very brave to come to your decision and wish you luck with getting pregnant! Talia, Mike and Charlie>> Hello,> > There is in indeed 50/50 chance and there is a test you can perform while you are pregnant (after 10 weeks I think).> > My husband has BPS and we have decided to pass a test when I'll be pregnant. Since we know what it is, and his type is the one with women's infertility, we want to do what is possible to avoid it... I would be unable to tell to my future daughter that she will never be a mother and that I knew it before to be pregnant....> > We have met specialists in genetics, who have performed the test (based on my husband's cells), and the team is ready... I would like to get pregnant in the coming months... :-)> > If you want to discuss it, I would love to ! It is the first time I met someone speaking about something else than eye surgery in the forum .> > Kind regards,> > Astrid.> > > > > ____________ _________ _________ __> De : brittany_seslar <brittany_seslar@ ....>> À : blepharophimosis> Envoyé le : Samedi, 27 Décembre 2008, 22h48mn 29s> Objet : blepharophimosis testing> > > Does anyone know if their is a test I can take while I am pregnant to> find out if my child will be born with this eye condition? the father> of my unborn child and his 4 year old son both have blepharophimosis.> I have read that it is a 50/50 chance that it will be passed on to> your child...is that true?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi  Sorry I do not participate in these discussions very often but have been following this thread with interest.  I have type 1 BPES and fell pregnant naturally aged 23 and have a wonderful daughter who does not have BPES.  I am now unable to have any more children naturally but am fully aware and educated on the many other options that I could take if I so choose from donor IVF to surrogacy to adoption.  To possibly choose to abort a baby on the ground that she 'might' be infertile at some point is a very big choice, not all type 1's are infertile from day 1.  I do not mean this in an unkind way, more thought provoking I guess; would you make the same option if the scan showed a boy had only 1 leg and may have trouble walking for instance? My father has the condition and he and my mother were very aware of the fact that I would probably have the condition, and again it was something that crossed my mind often when I was carrying my daughter so I can see your perspective but I thought it might be of some use to know that BPES for type 1 females can have happy baby results J  I wish you luck with your journey. Bryony Norton Security 2009 - http://www.tiscali.co.uk/security ________________________________________________ Quote Link to comment Share on other sites More sharing options...
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