Bad genes and children

LegacyUser

A genetic illness runs in my family but there is no way of testing for it. Its very very rare and requires very invasive treatment. Doctors don't know the odds of passing it on to my children.
I am in a serious relationship and we want to have children but I know I cannot cope with a special needs child. I saw what my parents went through and even when I was small I knew I didn't want to be around illness when I grew up. I am going for counselling to deal with everything but I am terrified of giving birth to a sick child because I know I won't want it.
How have others dealt with this?
I know I sound cold about it but I have to face the facts, so I don't need to hear inspirational tales of parents' hearts soaring with love for their sick children. I have seen how it affected my family and I do not want to repeat it.

LegacyUser

Well take it from a mother of a special needs child, you find a way to cope. Nobody chooses to have a child with special needs and before I had my child, I always thought it was something that happens to someone else.

Well my child is a just another person who happens to have special needs. Nobody knows what the future holds or whats around the corner and any one of us could end up having an illess or special needs.

Sure who knows you may have a child free of the genetic illess that runs in your family and they may have something else that is a lot worse, are you gonna discard them then?

Honestly if you feel that way, dont have children, Anyone who plans a child takes a risk that they may have a child with special needs. Thats life, we just have to take what we are given and get on with it

And just wanted to add that my child with special needs has taught me an awful lot and not to take anything for granted,

You sound like a very selfish person. Best of luck with having that perfect child

Tmeos

Hi there, to start I don't think you're being selfish at all, it's completely understandable and I think many people whether there is a genetic condition in the family or not would worry about how to care for a special needs child. My advice to you would be to try and weight up the benefits and risks i.e. how badly you really want a child and whether you would be willing to give that dream up to protect yourself from the risk of having a special needs child. If you did have a child with special needs I'm sure you would find a way to cope but having said that I don't think anyone should begrudge you your anxiety about it.

Perhaps speak to your counsellor about the subject and get a professional opinion.

LegacyUser

nobodyplans wrote: »

Well take it from a mother of a special needs child, you find a way to cope. Nobody chooses to have a child with special needs and before I had my child, I always thought it was something that happens to someone else.

Well my child is a just another person who happens to have special needs. Nobody knows what the future holds or whats around the corner and any one of us could end up having an illess or special needs.

Sure who knows you may have a child free of the genetic illess that runs in your family and they may have something else that is a lot worse, are you gonna discard them then?

Honestly if you feel that way, dont have children, Anyone who plans a child takes a risk that they may have a child with special needs. Thats life, we just have to take what we are given and get on with it

And just wanted to add that my child with special needs has taught me an awful lot and not to take anything for granted,

You sound like a very selfish person. Best of luck with having that perfect child

I am not selfish, I think its more selfish to bring a child into the world you know will suffer. I saw my parents go through hell and back with this illness, as well as my cousins and aunts who also have it. I know what would lie ahead and I know I don't want it. Anyone can say "you find a way to cope" but my parents and I are all terribly affected by what we went through and I think I'd be very selfish to put normal kids through what I suffered as a child, which involved being farmed out to relatives as my siblings were given days to live and being told if I wasn't a match for bone marrow my sister would die.
How is it selfish to not want that for your child? You have no idea how awful it is to be a child at the centre of medical crises that you have to deal with.

username123

Friend of mine in exactly the same situation, decided she would take the risk and had a healthy baby (as in he didnt have the genetic illness). But she has decided not to tempt fate twice and does not want to have more children.

I think nobodyplans makes a valid point, you dont know what life is going to throw at you. What if your child did not have the specific genetic illness, but instead turned out to have something different? You cant plan for these things.

What if your child didnt have the specific genetic illness you fear, but instead a different genetic illness that came from a few generations back, or from your partners genes?

There is just no solid way of avoiding these things (in the absence of tests to identify specific genetic illnesses).

However - I do understand your dilemma, as this is not a hypothetical situation and you have a real fear based on life experience. Its ok to not want to repeat that experience yourself. There is also the argument to be made that it might not be much of a life for the child if they had the illness so why put that suffering on a child?

There are a couple of options you could consider that would avoid your genes being passed on and possibly propagating this illness. Yourself and your partner could look into adopting, or see would egg donation be feasible - so that your partners sperm would be used, and you would carry the child, but it wouldnt have your genes.

Id also be inclined (if I were you) to speak to a fertility specialist, as it ay be possible now to test for this in early stage pregnancy (but not in the past) as advances in fertility treatments including genetic testing have been made even in the last number of years and a GP may not know all that is available.

LegacyUser

bad gene wrote: »

I am not selfish, I think its more selfish to bring a child into the world you know will suffer. I saw my parents go through hell and back with this illness, as well as my cousins and aunts who also have it. I know what would lie ahead and I know I don't want it. Anyone can say "you find a way to cope" but my parents and I are all terribly affected by what we went through and I think I'd be very selfish to put normal kids through what I suffered as a child, which involved being farmed out to relatives as my siblings were given days to live and being told if I wasn't a match for bone marrow my sister would die.
How is it selfish to not want that for your child? You have no idea how awful it is to be a child at the centre of medical crises that you have to deal with.

Ehh I have no idea??? I know all too well what its like.

What I am trying to say is there is no guarantee that even if the child didnt have the illness that runs in your family, they could be born with other special needs. Thats the risk you take.

Ive been tru hell and back in the last few years but I wouldnt change my special needs child for the world. In my eyes my child is just as perfect as anyone elses only he has extra needs

Have you seen a genetics counceller? if not than that is your next step.

seenitall

OP, I feel for you. You are certainly NOT a selfish person. You are responsible and concerned about the future. No one can be selfish toward someone who has not yet been conceived! (I don't know why, but for some curious reason, some people think that it is possible.)

For chromosomal defects like Down's syndrome (for example), it is simple these days to avoid them. You can have IVF and produce several embryos with your eggs and your OH's sperm, and then people in lab coats size them up under the microscope (or in some other way - I don't know), discard the defective ones and use the healthy ones. It's called Pre-implantation Genetic Screening (or something very similar).

If genetic markers for your family's illness haven't yet been found, it is only a matter of time. They are finding these genetic markers all the time these days. They have found them for breast cancer, for example.

So if you want your biological baby more than anything else, if the marker/s for your family's illness haven't been found yet, and if you have financial resources, I would advise you to have IVF now and have the embryos stored for later, when they do find the markers.

Other routes would be, as someone else noted, egg donation or adoption. Neither of them will give you a child that is genetically your offspring, thus avoiding the risk you face.

I would now like to emphasise that the opinion given in this post is nothing more than a result of reading the newspapers and watching news about latest scientific breakthroughs on tv, etc; I myself do not have any scientific background whatsoever, so the best tip I can give you is to talk to either a qualified geneticist or a qualified IVF specialist, or both.

The best of luck to you!