Would you still reproduce?

Kayle - posted on 12/12/2010 ( 39 moms have responded )

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If you had one child that was born with special needs and you knew it was linked to genetics would you still have more children even though you know they could be born with special needs?



See my son has septo-optic dysplasia which has caused an on set of problems for him. (seizures, partial blindness, diabetes insipidus...) Thursday we go to meet with a genetic counselor to get back the results of the genetic testing and find out more info. I am really scared to have another child because of what Kamden has gone through. He's been through hell in his short time. At the same time I know that I would beable to love and care for another child just the same.



So tell me what you would do. Or if anyone else has ever had to make this decision.

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Mary - posted on 12/13/2010

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The truth is, it really doesn't matter what anyone else wants or would do. All that matters is what you and your husband want. I think that many of the people (other than Tracey) are responding no because, from the outside, it seems like having a special needs child with multiple health issues seems like such an overwhelming, all-encompassing job - and they're not wrong about that. Most people do not volunteer to parent a special needs child - they just find themselves doing it because it is the hand they have been dealt. To consciously risk it again seems almost insane to those on the outside looking in.

I doubt that many of us ever fully understand, or acknowledge that ALL of us have the potential to be parents to a child with multiple health problems, with or without genetic risk factors. A cord accident in utero, a car accident that causes an abruption, a spontaneous chromosomal mutation at development...it could happen to anyone. No one, regardless of their perfect family history, is guaranteed a normal, healthy child. Even the child born perfect has a risk of just about anything occurring after birth; I know my friend whose daughter developed leukemia at 9 months didn't see it coming.

The difference for you is that you KNOW what it's like. You know what you are capable of. Regardless of what that genetic counselor tells you, only you and your husband can decide if having another child is right for your family - with or without an increased potential for a repeat of your son's disorder.

People will probably fault you either way...but that's true of every decision we make in life. All that matters in the end is how you and your family feel about it.

Krista - posted on 12/12/2010

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No, I would not take that risk. It's one thing when you don't know, but it's quite another when you DO. And, sadly, it sounds like your adorable little guy is going to need ongoing care. You might be able to love and care for another healthy child, but what if your second child has this same condition? Can you honestly say to yourself that you can give both of those kids the level of care that they would require?

No -- I don't think it would be fair to try to have another bio-child if I knew the odds were good that he'd wind up with such a condition. If I did feel that my heart and home were ready for another child, I would look into adoption instead.

[deleted account]

I'm with Tara - ie considering getting a sperm or egg donor if you can work out where the problem is coming from.

PS Jocelyn - is autism genetic? I kinda thought nobody knew why it happens (but admit I haven't researched the issue).

[deleted account]

Honestly, no, I would not risk having another child. But that is because I know my own limitations as a parent. It has nothing to do lovign a child. It has everything to do with making huge sacrifices in order to care for a special needs child. So if I had to completely quit my career to take care of my child, then that's what I would do as a parent. But then to have another child with the same potential condition? Nope-not for me.

[deleted account]

If it was me and it was linked to genetics then I would stop at one.

Hubby and I have already made the decision to stop at one because our son was born 14 weeks premature. We were told it would happen again with any other pregnancy. We couldn't put another child throuhg what our son went through. We're lucky and our son is a healthy 2 yr old but I know other preemie parents who weren't so lucky.

I hope it's not genetic and I'll keep my fingers crossed for you. (to echo the other moms - Kamden's a cutie)

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[deleted account]

Jakki they believe some types of autism are genetic. it could be the environment the expecting mother or child are exposed to it could be immunizsation (if you really believe that) it could be because your 27th cousin jimmy-bobby-jim-bob jnr made out with his second cousin in the fourth grade. they're really not 100% sure they have some theories but what is in one case is not in the other

Lady Heather - posted on 12/13/2010

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Learning to crawl at 11 months? My daughter learned to crawl at 17 months and she has no condition to blame that on! Ha. Bravo Mr. Kamden!

Krista - posted on 12/13/2010

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He sounds like an absolute doll, Kayle. I'll keep my fingers crossed that the genetic testing turns out well for you, and that you're able to give Kayle a little brother or sister to play with.

Kayle - posted on 12/13/2010

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Thank you everyone for the feedback.

A little more information about Kamden. He is for the most part a normal 11 month old. He is only slightly delayed developmentally. He's learning to crawl!!! He is still such a happy boy. When he was in the hospital last week he had the doctors and nurses cracking up and was doing this 20 mins after he had a seizure. He has a great personality (other than being slightly spoiled, mommys fault). He loves people and to cuddle. As hard as it is for us sometimes I don't think we'd have it any other way.

Let's just hope that genetic testing says that it's not linked to genetics. I know I'm not ready for another baby quite yet. But I'm already getting the want for more. I think I'll be heart broken if they say it's linked to genetics.

Lady Heather - posted on 12/13/2010

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I guess it would depend on what it is and what the odds are. I'd make use of embryo selection if I as able for very severe things. Otherwise I might try to look into adoption.

I have epilepsy and it's definitely genetic (a few other family members have the same type too). I run the risk every time of having an epileptic kid I guess. But I've lived with this my whole life and it's not the biggest deal for me. I don't think it's bad enough to warrant weeding out.

[deleted account]

The parents I know with special needs children receive so much joy from those precious babies. We all do really, but it seems like with each new victory their joy is tenfold of what mine is with my average child. Honestly, I don't know if I would chose to have another or not n your situation. Only you know what you can handle. If it's a lot of stress on you and your family, I would consider not having another. But you say you can handle it just fine...so maybe another wouldn't be a bad idea. Unless you don't like the idea of having another child in pain. There are so many variables to think about. Regardless, I know you will make the best decision for your family, and don't listen to the naysayers! *hugs*

Krista - posted on 12/13/2010

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He's just an adorable little button, isn't he? Man, I'd have a hard time not spoiling that kid rotten, just to see him smile.

Jackie - posted on 12/13/2010

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I'm sorry but I don't have an answer to this one because I honestly can't say I would or wouldn't (in your personal situation) but I do want to say that the picture of your little boy is so cute! Seeing him in the hospital makes me sad. I really hope he gets better soon :) Sending well wishes to you and Kamden for the Holidays ♥

Amanda - posted on 12/13/2010

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I don't think I would want another child if the odds were against them. If they were going to end up with a disability or disorder I wouldn't wish that upon them and have another child. Personally it would be hard enough to handle the one with the disability alone yet alone have anther. I give you props on handling your situation the way you do. I consider myself extremley lucky being a teen mom with my son, and having 3 healthy beautiful daughters as well. I've heard of so many people having complications or ending up with a child with special needs, and I don't know how I would do it. It would be so hard! But I would definetly love my child either way. I just don't think I would choose to have another one.

Rosie - posted on 12/13/2010

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i looked a little more into it, and it seems as it's highly variable. and is most of the time NOT genetic. it's a fluke. however if your sons does turn out to be genetic, since it's highly variable, i still stick with my original statement. you are making me wonder about my children. my oldest and youngest have vision problems, my youngest is the worst. and they all have diabetes insipidus, and have spent so much time in the hospital, and specialty clinics tying to figure out what was wrong with them. hope kamden gets better soon!!

April - posted on 12/13/2010

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i would also like to add that one cannot predict how the child in question is going to handle life. One cannot guess who is going to overcome the odds or have a unique way of dealing with their condition. My friend's daughter that I mentioned in a previous post...well doctors said she would never walk. It only took 5 years (kindergarten) but that little girl did it! She still can't talk but who's to say that will never happen or that her quality of life is poor?

Jenn - posted on 12/13/2010

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Personally I don't think I would - but I would look into adoption if I wanted more kids.

Tracey - posted on 12/13/2010

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My husband was sterilised a couple of months after our son was diagnosed with his disabilities which may or may not be genetic, at the time it was suggested they could be due to Gulf War Syndrome but I felt I couldn't look after any more children.

[deleted account]

I'm sorry but I wouldn't I feel sorry for those children who are siblings to a child with special needs. I couldn't have a child with special needs then risk having a "normal" child, imagine how it would be mum and dad too busy looking after your sibling because they're sick. Cystic Fibrosis runs in my family and if my son was born with CF i wouldn't have anymore. He wasn't and I'd like another three more even though genetics says one of them would be I would like to hope its none of them. thats my personal choice my aunt did have two children with CF and that was her choice to have another child after her first. I know i still wouldn't be able to cope with a special needs child regardless

Jocelyn - posted on 12/13/2010

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For me it would have to depend on the disease and the severity. If my first child was...say going to stay at the mental age of a 12 month old, kinda stuff...then no, I don't think I would take the risk.
My son has a form of high-functioning autism, and while I do believe that genetics has something to do with it, we still decided to go ahead and have another child, because he has something that is "fairly" easy to deal with (well, it's not EASY but bear with me. It's in the grand scheme of things).
I would also take into account any specific traits of the genetic disease: eg if it only affects males, then I would fall back on gender selection, and spin my dh's sperm to get only females.

C. - posted on 12/13/2010

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Honestly, this is the type of situation where I would have to be in it to know what I'd do. But I'd like to think that it wouldn't deter me from having anymore kids. Doctors are not always 100% sure and sometimes the outcome is different, so there's always a chance you could have a child that doesn't have special needs.

Becky - posted on 12/12/2010

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That's a hard one! For me, it would depend on the severity of the genetic issue and the odds of another child having it. At this point, it's kind of a moot point for us, because we're only planning on having one more anyways, so whether that child is completely healthy or not, we're done. But if one of my boys had special needs... actually, thinking about it, we probably would be done now. I think my husband would have difficulty handling a special needs child, so I think it would take all our resources to manage that. It wouldn't be fair to have another child.

Mrs. - posted on 12/12/2010

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You know another friend of mine had two healthy girls and then tragically with her third pregnancy had to have an abortion at 4 months due to a severe chromisonal issue. It turns out it was genetic. She was deeply upset by this and went through the process of genetic counselling as well. They gave them a lot of options and as Jodi A. suggests they did do IVF to avoid the tragedy of the last pregnancy. The tried for two years and a couple months ago they just gave birth to a healthy little baby girl.

She too was frightened about the whole process but it seems it worked for them. We are lucky to have that kind of counselling available so you can weigh your options and do the best for you, your little boy and the rest of your future children.

Jodi - posted on 12/12/2010

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I like Tara's suggestion. Or, if they know how to test for the gene, you could explore the possibility of IVF because with some disorders, they can check the genes before implanting, etc (I don't fully understand it, but I do know that some genetic disorders can be tested during the IVF process). But I don't believe I would risk conceiving naturally.

Sharon - posted on 12/12/2010

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Some thing else from my previous line of work.

Some handicapped children require such a GREAT deal amount of care. Some require around the clock care 7 days a week. There are no family vacations, no day trips, no baby sitters.... its just to complicated, if not impossible to arrange. So, even if your second child is healthy, what chance do they have at a "normal" life?

Oh I know, people will say, "they'll adapt because they love their sibling" sure they will and they'll be largely unhappy and shortchanged in the attention department from their parents. usually from the mom, because every case I've seen, the mom does all the special needs care. The dads pitch in a little but the moms are so freaked out about something going wrong, its hard to let go.

Some, its weird. They practically go mechanical about the special needs child. they do everything on automatic pilot, nurses come & go on a rigid schedule, they seem numb. Very few "get it right". They manage to trust their spouse, accept helpful gracefully from outside care sources ... but they didn't have more kids. A couple had older children, but after the special needs child was born, that was it. The cost and practicality prevented them from having more kids.

I had all that stuff in my head when we had to make a decision about my pregnancy. Its hard and its heartbreaking. But it was different for me because at that point I had two healthy kids.

hang in there hun, I hope you get good news!

[deleted account]

I wouldn't have a second child. I wouldn't knowingly put another little life at risk of having the same genetic problems as the first. IMO, adopting a baby whose parents couldn't or wouldn't take care of it is a much better idea.

But I know a lot of people who'd blast me for feeling that way, but oh well. It's my opinion. I'm entitled to it.

Nikki - posted on 12/12/2010

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It's a really personal issue, it would be a hard decision. If it were me, I think it would depend on a couple of things, firstly what are the chances of your next child being born with the same condition? If in worst case scenario it happened again would you be able to cope? I agree with Tara's suggestions of looking for sperm or egg donors if you find either you or your partner are the genetic link, that is something I would possibly look into if I were in your situation.

I hope your little boy is ok xxx

[deleted account]

I wouldn't. It's not because i couldn't care or love another child it would be because of quality of life. I'd rather not bring any other babies into the world if they have to suffer later on.

Stifler's - posted on 12/12/2010

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I have no idea really. My husband's cousin has Downs and his younger sister is just fine. I would have to do more research on the odds of the particular condition my first child had before going for another one.

[deleted account]

I don't have very much experience w/ special needs, so I can't say for sure. I think it would depend on how I was coping w/ the first child's issues, the particular type/types of disability involved and what type of suffering that means for the child. Something like Down's Syndrome... probably, but w/ what you're describing.... I don't think so. I think I would look into pursuing fostering/adopting instead.

Tara - posted on 12/12/2010

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If there is a chance that another child will be born with the same issues, then personally I wouldn't have another biological child. If it were my husbands genes we could use a donor, if it were mine we could use an egg donor. That is if we really felt we could care for another child and still give our first all the care he would need. It's a personal choice and largely depends on the odds and severity of the special need.

Krista - posted on 12/12/2010

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And I agree with Rebecca -- your son is lucky to have such a strong mother. It breaks my heart to see such a sweet little mite all bandaged up and in the hospital, and I hope his health improves.

Kayle - posted on 12/12/2010

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We have had the genetic testing done but have yet to get the results. Not sure if the testing did go through because of insurance. But the counselor will beable to tell us a little bit more about his diagnosis and whether or not it would be linked to genetics. I'm just trying to prepare my self for the results.

April - posted on 12/12/2010

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For me it would have to depend on what the genetic issue was and what the odds were. For example, my friend has a daughter that was born with a genetic brain condition. It was a freak accident of genetics...not something that was passed on to her from her family. The doctor said there was only an 11% chance of having another child with the same condition. 11% was just too high for my friend, but it wouldn't be for me. I'd go ahead.

Rosie - posted on 12/12/2010

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so have they linked it all genetically yet? i'm a little ocnfused cause you said in the first paragraph you knew it was genetic, but you havn't been tested yet?

all 3 of my boys have diabetes insipidus. i did genetic testing with my last one. they don't have the other issues you are talking about other then the diabetes insipidus, and possibly high funcitoning autism with my oldest.

i think if i knew more about the disorder i could help a bit more, but right now from what you've typed i personally would have another child.

Sharon - posted on 12/12/2010

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I forgot to add.. we weren't facing a genetic issue. I caught a virus at a stage of my pregnancy that meant possibly heart and brain defects. either instant death on birth - if they survived that long or a lifetime of suffering and surgeries - if they lived through the early ones.

Mrs. - posted on 12/12/2010

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I have to admit, I saw your son's pic yesterday and I saw that he was obviously in the hospital. I couldn't help but see my daughter, they have a similar looking smile. I really don't know how you do it. Your son is very lucky to have such a strong mother.

That being said, I was just having this discussion with my friend who has a son with Asperger's. She has several family members with Autism and with her son having so many issues...whelp they've decided to not go ahead with having another child.

I can not imagine what I would do. It would be very hard to decide. I can only speak for the other mom I know that has gone through the same thing.

Sharon - posted on 12/12/2010

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Depending on the odds...

No. I don't bring anything into my life on purpose to watch it suffer. Of course if it happened, I'd love them, but if I had a choice? Fuck no.

I mean really? If thats your mind set, why not just blind & maim your kids from the get go?

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