A genetic disorder and a broken marriage - Need Opinion

Hi all, I am new to this forum and need some suggestions on what are the options I have in handling a situation I am going through. It is a bit long post, so please bear with me.

I am in early 30s, married for past 2 years, no kids yet and till few months back was leading a happy married life. My wife is one of my best friend and we go well together. Few months back, we came to know that one of us has a genetic disorder - Retinitis Pigmentosa, a progressive vision loss disorder that has no treatments yet - that has a 50% chance of passing it to our offspring. Here I am not saying who has this disorder because it is irrelevant and we both are not concerned that one of us will have a defective vision at some stage in his/her life. We are well matured to face its consequences on us. Also has support from both of our relatives.

But we are not in the same boat when it comes to what to do with our offspring. We don't have kids yet. One of us is of the opinion that we take that other 50% chance and hope that God will be with us, so that this disorder will not be passed to our offspring. But the counterpart is not ready to take that 50% chance and wants to opt any medical options available to avoid this being passed to our offspring. The difficult part is the medical options available, such as PGD with IVF, is not simple and possess high health risks to my wife and more than that the success rate of these treatments are not 100%. One other option is surrogacy with a donor sperm/egg which will have too much of emotional stress and concerns on how we will deal with later in our life knowing that only half of our baby belongs to both of us and the other half belongs to someone we don't know.
To make things worse both our parents too are not in the same boat with each side supporting their own son/daughter’s thoughts. We have not yet reached on an amicable solution and now our marriage is heading towards a divorce.

When I said it is heading towards divorce, you can imagine all acquisitions we might have made each other in that heat of the moment conversations, such as saying either one of us is selfish, Or the other person cheated by not revealing this disorder before marriage (this disorder is known in that person's family and there are few affected members as well), Or that one of us is having another affair, Or one of us is lying and is indeed concerned on himself/herself instead of offspring etc etc.. To top it up, we both have family pressure, questions from friends, relatives, co-workers and even some strangers, who just happen to enquire "How is/where is your spouse Or do you have kids" !!! And all these are breaking the trust we have on each other day by day.

Now what are the options any of you can think of to avoid this divorce? Or put it in other words, what you might have done in such a scenario? Conceded to the other person's thoughts and avoid the divorce?

hi seemslost
well i think i would be hurt for having not been told but then thinking about it i would realize that in the gooeyness of love, none of that stuff matters. couples believe they can conquer anything that comes along.

that being said, if i remember my highschool biology, i think it is only a 25% chance of passing it along if one party is carrying the gene. it has to be a recessive gene or that party would have the illness which means they would be contributing a good gene and a tainted gene to the gene pool along with the other persons 2 good genes.

and what is so horrible if the child does get it? blind people are people too. it is a disability like any other that you would have to deal with and one that has had many advances in society to deal with it. my child started going blind at 8 due to a genetic issue we knew nothing about. he got special services in school, all kinds of advantages. fortunately within 6 years he had transplants and could see again, so i know it isnt quite the same. but people with disabilities are strong, they overcome challenges. you raise them to do that.

welcome to psych central. you will find we have several forums where you can post about your concerns and receive feedback from other members. you will get a lot of support here. again, welcome

I would seek a second opinion on the chances of it being passed along.. I can't imagine it being 50% if only one person is positive. I of course could be wrong but second opinions are always a good thing to do.

As for the worries about loving a baby that is or isnt 100% of you both? well , once you lay eyes on a baby your going to raise most people just forget about all that stuff..

Your marriage and what happens or doesn't happen needs to be between you and her , not you her and parents and coworkers.

I think couples Therapy would benefit your both.

Welcome to PC

Thanks kaliope. Regarding the probability, we have an autosomal dominant disorder, which has 50% chance to pass to offspring. The 25% chance is for autosomal recessive disorders. Yes, I do understand that disability don't make anyone less accepted in our current society. But one of us still oppose to take that chance because the consequences of that chance going wrong will affect our kids more than how it affect us. There is a difference between taking that chance knowingly and unknowingly. And one of us strongly believes that even if it spoils his/her own life, one should not knowingly put a still not born human-being in a difficult state.

Thanks Christina, regarding your point on marriage is between me and her, it is true, but sadly one of us is too attached to his/her parents (may be because this disorder is known among the family and they all need that family support) that the parent's decisions have a great influence on him/her. We had a counselling few days back, but with both of us sticking to what we think, it ended up with no conclusions.

You said your "wife is one of my best friend and we go well together." If that is true, you need to do whatever it takes to repair your marriage. If you don't, the regret you live with for the rest of your life could be a living hell.

Your marriage is between you and your wife. Family members and friends have their input and that's okay, but ultimately it is you and your wife who have to live with whatever decisions are made.

I think you, as a couple, should postpone even thinking about a baby right now. Think about a baby in a year. For now, I strongly suggest you go to couple's therapy and work on strengthening your marriage, coping with the genetic disorder, and becoming as "well matured to face its consequences on us" as you are telling yourself you are. Best of luck to both of you~

QFT, this is good advice.

When you are ready to talk about children, perhaps consider adoption if you prefer not to "roll the dice".

Thirding the advice above.

Since you are soliciting thoughts & opinions, unless your wife has some condition that you don't mention here, PGD with IVF shouldn't pose any significant health risks. It is true that it may not be successful. Personally, if I was in this situation, I would make it a financial priority to be prepared for at least one attempt at IVF, if not more.

This is a real tough situation to be in. Revelation of this genetic disorder should have been made before the marriage was entered into. I don't know anything about this disorder, and I would agree with Christina that you should get some additional genetic counseling.

Personally, I would have a hard time conceiving a child with a high chance of inheriting a disorder that could very negatively impact his/her quality of life. My own preference would be to start exploring the option of adopting a child unrelated to either of you. This would put you both on an equal footing in terms of investment in the child. Adoption can be very hard to arrange.

Before doing any planning for a child, you need to find out if this marriage is really healthy enough to be the foundation of a family.

Taking a chance, hoping for the best, is certainly an option, but only if you both are okay with that. I'ld have a problem with it, myself.

If you and your wife were truly best friends an you both want it back you can get it back. First you will have to go back and fix the trust issue and start from there. Once trust is broken it is very hard to get back, but it can be done. This will have to be done between you two and no out siders. This is going to make things worse. I would suggest continuing couslining, because this is someone that could get you two back on the same boat. But this will only work if you two let it work between you two. And I am with the others on having your own child, if one of you can deal with this in life you should be able to help a child deal with this if it comes to this. I hope this helps you. Praying for Godsend you the right answers,