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Should Bad Genes Mean No More Kids?

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My husband and I chose to have more kids, knowing we have a 25% chance of having another child with cystic fibrosis. Are we selfish? Maybe, but I think my daughters are pretty grateful to be here.

bab covered with baby towel

Homeschool Mom: Is it selfish to have more kids when you know you and your husband have a bad gene and you have already passed it on to two kids? Frankly, I'm not sure. I know I love my kids and I am taking care of their health needs and they are growing and thriving, but I also know that they have a big burden in their lives. I have the burden as well, of course, but it is different when you are the person who is suffering with the physical symptoms. They definitely feel the burden, they deal with it, and they are not happy dealing with it. In fact, I asked each of my children with cystic fibrosis if they could change one thing about their lives, what it would be. Each one said they would want to be free of CF. My husband and I have the same wish. Even the youngest, who does not have it, said her second wish would be that her siblings no longer had CF (her first being that she wants a pony).

Let's face it, having a chronic illness that demands many inhaled breathing treatments, oral drugs, sometimes intravenous drugs, and hospital stays, and which causes you to have pancreatic insufficiency so you have to take pills every time you eat, plus a host of other symptoms and problems that would take up my entire page, is not fun. But does that mean that never having been born would have been better? Well, how can anyone truthfully ever know?

I do know my children are happy and as healthy as their friends. Their condition does not prevent them from doing anything. They do have to work hard to maintain their health, and they have to see many doctors on a regular basis, but for now they are as energetic and exhausting as any other kids. The tragedy would be if their health deteriorates while they are young and they succumb to CF. Obviously that is not something I contemplate too often, because it would be heartbreaking, but when I really consider it, I know that a tragic end does not mean a life was meaningless, it means a tragedy has occurred.

There are no guarantees when you have a child. I remember when I heard about the Christian singer Steven Curtis Chapman, who lost his 5-year-old daughter when his son hit her while backing out of the driveway. Who could foresee such a tragedy? Children get cancer and other illnesses, and sometimes they die horribly and painfully. We do the best we can with our children's difficulties. I think my husband and I are good and loving parents who try to do the very best for our children. I would take my children's illness upon myself if I could. I would give my life for them, but I would never give them up, nor second-guess a decision to have given them life in the first place. The world is a better place because my children are in it, and you should all just count your blessings they are here!




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19 comments so far | Post a comment now
dean September 24, 2009, 7:04 AM

I am confused, are you talking about your current kids or having more?

Wondermommy September 24, 2009, 9:11 AM

My only concern would be what happens if something were to happen to you or your husband? Every child that is here deserves love, support, nutruing, guidance, etc.

If I were in your situation and contemplating having another I do not think the chance of another child having the CF gene would necessarily stop me from sharing love and all the good stuff with another being, BUT I would worry that if something hppened to me who would take care of them? Where would they end up? Calling for extra care can put a huge strain on anyone and their loved ones, but who would be willing to take it on if something should happen to you or your partner?

Other than that I agre with you whole heartedly - children are a gift, they are the future and the best “gift” we as parents can leave behind.

Good luck in whatever you decide.

N September 24, 2009, 9:41 AM

i think it can be selfish, my stepmoms sons including my half brother all have either autism or down syndrome, ad she dfoeasn’t get them help for their conditions so yes it can be selfish

Me September 24, 2009, 11:27 AM

LEt me put it to you this way. Your kids are grateful to be here BECAUSE THEY ARE HERE! It is not only selfish of you but cruel! If you want more kids ADOPT! But to knowingly set up a life to have to be a struggle is wrong! I suffer from a little known disease and have chronic pain, insufferable unimaginable pain, I have to rely on people on bad days to help me do EVERYTHING from brushing my hair to getting me a drink (in an adult version of a sippy cup because I cant hold things and drop everything all the time!) I hate to go out and have people look at me and stare because I walk funny or use a walker. I get frustrated on good days when people say “but you don’t look sick” or “you seem to be doing just fine” when they don’t realize it takes me 4 hours just to get functioning and by the time I am up and on my feet I only have maybe 20 mins before my legs fail or something dislocates. Do I wish to be like this? HELL NO! Do I wish I was “normal” and able to do what all my friends can do YES! Would I ever say that to my Mom? NO WAY! I wouldnt want to hurt her, but if I had a choice there is no way in hell I would want to be here like this! Knowing I have a genetic disorder, well, there is no way in hell I would EVER think to bring a child into this world with even a 1% chance of getting this!! If you have never been sick yo have no idea what its like, even if you have kids that are sick you still can’t fathom the battles we fight in our heads and our hearts on a daily basis! You don’t know that alot of what we say and think and do is done to make it easy on you, the parents, the friends family etc we dont want to feel like a burden, like we are chronic pains in the butts so we put on a brave face and a good attitude. You have no idea how mean, cruel and selfish you are if you choose to have another child. If its all about the love of a child adopt! I bet tho, its more about your ego “my seed or nothing”….You really need to think before you act, its not always all about you!

anonymouse September 24, 2009, 12:22 PM

Yes. It is.

I support you September 24, 2009, 1:53 PM

I support your right to have another child- but I certainly hope that you are not against incestuous couples having children. If you are allowed to have children knowing that you will probably be passing a trait like this off, then everyone should be allowed to have children- including incestuous couples.

Pamala September 24, 2009, 2:10 PM

I have a 50% chance of passing along a gene for the condition my daughter has. It’s not one of those conditions that makes life difficult, and she’ll most likely grow out of the condition as well. Would I have another child? Yes. My daughter’s condition isn’t something you’d know she had unless I flat out told you about it. She’s normal, does everything else every other child does, and her condition hasn’t limited her in any way. It’s an easily managed condition as well. So I can’t see any reason to not have another child. I apparently had the condition as a child as well, and I don’t have it anymore. So it doesn’t worry me at all.

Megan September 24, 2009, 2:16 PM

I think if you want to love another child or 5 more children that is your right to do so but Why would you want to possible bring a child into that life when you can adopt? I’m not sure of the genetics but maybe you can try different eggs or sperm. I would just say look at the other options because what happens if you do have another child with CF. How would you feel?

Kristen September 24, 2009, 3:36 PM

We have 2 children, one with asthma/food allergies, another with aspergers. After these two we decided that we HAD to be DONE having children, because we were scared for the next child possibly being worse off. If you have one or two children that has a disability I think it’s kind of wrong to have more.

abbi September 24, 2009, 5:02 PM

yeah, it is really selfish actually.
why don’t you adopt a child who is healthy but disadvantaged?
why do you feel the need to continually pollute the gene pool and continue this trend of affected humans.

yea i get it’s your kids, or somebodys kids, but come on!!

you even point out how it’s harder for the carer/the person with it/those they form relationships with and can possibly affect future children.

yeah you’re actually very selfish, and stupid. open your eyes.

Jenny September 24, 2009, 5:13 PM

My husband and I decided not to have any more children after our first was diagnosed with a chronic tic disorder and OCD. I just couldn’t bear it if we chose to have another child full knowing that we have these genes and then that child comes down with full blown Tourettes which would make their life very difficult both physically and emotionally. I’m blessed to have my daughter, I would never ever change her but I just couldn’t bear if I brought a child into the world that would suffer and I knew it was a possibility.

Jenny September 24, 2009, 5:15 PM

Abbi,

I understand your point of view but I think choosing the phrase “pollute the gene pool” whether true or not was quite hurtful, as if our kids that are already here and have problems are damaged goods or not worthy of being here. Granted I’m sensitive due to my child’s issues but I do hope that next time you might think of a way to say it without being hurtful.

Jenny

mom of 2 September 24, 2009, 11:56 PM

Yes it is selfish. I had a cousin with Cystic Fibrosis. And yes I said had. She died when she was 20, she was not expected to live past 12. How fair is it to a child for you to have them, let them enjoy life for a short while and then them not being able to fully live it. She did not marry, have kids, or even start a serious relationship because she knew she would not live long. It is very selfish. If you really want a child adopt a special needs child there is no shortage of children that are already born that will never be able to fully enjoy their lives and do not have people to truly love them.

Tara November 12, 2009, 11:38 AM

I am the mother of an 8 month old with CF. We knew he had CF through prenatal genetic testing. We chose to continue the pregnancy because we believe God only gives us what we can handle. He is a blessing and the joy of my life. He will be loved more than and taken better care of than many healthy children. I think your judgements are harsh and hurtful.

Jennifer C November 14, 2009, 5:12 AM

I am the mother of two CF children. Both were adopted and the two of them were not biologically related. Our son we adopted from birth. He was 7 months when he was diagnosed with CF. Our daughter was 3 years when she came to live with us and was a ward of the state. We knew she had CF. We CHOSE to raise two CF children. We had 3 other children - one more adopted and two biological = the oldest two. Hard work? YES. Wouldn’t trade this experience for anything. These two children have taught me so much as they have learned along the way in their journeys. Our daughter died at 17. Our son is 26, almost 27, married and in the process of trying to have a child. They have screened for the CF gene - his wife does not carry it. In all of this I am trying to give a different perspective to this conversation. I am not “responsible” for the CF diagnosis as I am not biologically related. Take that out of the equation as none of us are responsible for the genetic makeup of our children. These two children we CHOSE to raise have been only a blessing. I have and would lay down my life for our son and his wife. But that is true of all of our children, their spouses and now our grandchildren. Attitude is everything with dealing with CF - both yours and theirs. There are no guarantees in life - only love and hope. Thanks for the blessings of all of our children.

Molly April 27, 2010, 9:49 PM

I know my post is months after the fact. I came across this post when researching prenatal genetic testing for an ethics class. I just want you to know that I think it is amazing that you are raising two kids with CF. I would completely support you if you choose to continue having children, even if there is a chance those children will have CF. People will CF can now live well into their 50’s. Its not the condition it used to be. When I interviewed people who work in disability services for my paper, they said that people don’t like disabilities, because disabilities aren’t pretty and we like to see pretty things. CF may seem like a horrible condition to people like me who have never had any experience with it, but I believe that someone with CF has every right to be born into this world. You are a wonderful mother and I don’t think you are selfish at all. :)

Griselda Rysanek December 2, 2010, 8:20 PM

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JG April 15, 2011, 8:57 PM

I realize this post is very late, but I just read yours and it spoke to me so strongly I felt I needed to respond. We are also raising two cf children. My son was 3 when we PURPOSELY started trying to get pregnant again, my daughter was NOT an accident. We figured if we had a 75 percent chance of winning the lottery then we would play like crazy. Although my daughter also has cf, she is the lottery to us. They both are. Was it selfish? Does it matter? It was our decision to have both children, it is our time and effort that we put into raising them; the kids are happy and well adjusted (for teen agers) Did we make their life hard? Yes, however, we could have had “healthy” kids who grew up to have cancer, or other diseases, there was no guarantee we would have a “healthy” baby if we adopted. Love is love whether I am loving my beautiful, intelligent, amazing, incredible children who happen to have cf or my stepdaughter (equally beautiful, intelligent, amazing and incredible with no cf). By the way, the person who said we were “polluting the gene pool,” makes me wonder what an in-depth exploration into his/her genetic make up would reveal. I think, at the least, ill manners and poor judgement would show up. Oh what, that isn’t genetic that is a product of being poorly raised. Perhaps the next question should be whether or not parents should have to pass an “ability” test to have children. :D Peace and health to you and yours.


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