Genes.

[rivka]

More and more, lately, I've been thinking about wanting to have a baby. It's partly to do with wiredferret's pregnancy, and partly to do with turning 29, and partly to do with the fact that finishing my dissertation is finally on the horizon. That's been my self-imposed limit: no babies until they'd have to call me Doctor Mommy.

Someone asked me recently whether my disabilities are genetic, and how that plays in to my decision to bear my own genetic children if I can.

Are my disabilities genetic? Maybe. Some. Yes.

Scoliosis and hip dysplasia are hereditary. Not in a simple way - not a single dominant or recessive gene, for example - but they run in families. As far as my arm and hand are concerned, it might be a genetic mutation or it might be an error in development. Probably an error in development. I also have poor eyesight and allergies and rosacea, which run in families as well. And curiousangel has some allergies and some vision problems which are his to talk about, if he likes.

We've talked about the possibility of our children inheriting some or all of my physical problems, and we're planning to have children of our genetic own anyway. If an ultrasound showed that our child had hip dysplasia or a malformed arm, we would not have an abortion - but we probably wouldn't have a second child. That's the balance I'm currently comfortable with.

It's not that I haven't considered whether it would be unfair to pass on my genes. I have. But here are the things that temper that concern:

First, advances in medical science. Already, no doctor in the world would treat a kid with hip dysplasia in the way that I was treated. I was put in a cast from my armpits to my toes from age 3 months to 15 months, and it caused permanent serious damage to my right hip. I had some surgeries later on that they don't even *do* anymore - they don't work. The current treatment for hip dysplasia is much less horrible and much more effective - that's just been in the twenty-nine years since I was born. When I was a child, it was still widely believed that babies didn't feel pain. I wasn't given any pain medication for my early medical treatment - that would never happen now. And in more recent years: artificial hips improved dramatically between the time it was first recommended that I get one and the time I got one. There are new medicines for managing chronic pain that weren't around six years ago when my pain was at its most crippling.

If my child were to have the same problems I had at birth, the outcome wouldn't be the same. Medical treatments aren't the same. In five years or ten, there may be cures for every health problem that currently troubles me. I don't know. I can't project.

Second: my medical problems aren't the only thing my child will inherit. Things like intelligence and personality (or at least temperament, the building blocks of personality) and musical ability are also heritable. I see things in curiousangel and myself that are worth passing on, even if my medical background isn't free and clear.

curiousangel and I are probably going to end up with a short kid with allergies and vision problems and a big nose and fair sensitive skin, and possibly with seriously messed-up joints. But we're also probably going to have a blue-eyed, dark-haired, intelligent, careful, affectionate kid with a good singing voice. Our child will have no family history of breast cancer or heart disease, and will have several ancestors who lived into their 90s. If you consider only my hypothetical disability-related genes, then yes - it looks as though it would be better for the species if I don't breed. But my hypothetical disability-related genes don't exist in isolation. They're part of an overall package of genetic inheritance that, to me, is of value.

I've spent enough time being a visibly disabled person in American society that I know I can expect to hear these questions if I do become pregnant - even from strangers. A lot of people are convinced that they know whose genes are worthy of perpetuation and who should refrain from reproducing for the good of the species. I suppose that it's a good idea to start practicing my answers. And my cold stare. *grin*

Comments

[patgreene.livejournal.com]

But we're also probably going to have a blue-eyed, dark-haired, intelligent, careful, affectionate kid with a good singing voice.

Not to mention a wicked sense of humor.

I think your kids would probably be really neat.

[saoba.livejournal.com]

My personal favorite when I was pregnant was to look at the person in innocent confusion and say, "Why on earth would you think you could ask me a question like *that*?" See assorted busybodies retreat in confusion.

Barbara, who also once told someone who inquired that what she was going to use her breasts for was of concern only to the people she was going to share them.

[mactavish.livejournal.com]

You'd raise a fabulous child, period.

[lcohen]

all of that was beautifully put. thank you for sharing it.

[geminigirl]

We all have traits that some people consider "positve" or "negative"-some are visible, some aren't. More importantly, are you prepared to be a good parent, to care for, love and raise and empower a child to be a healthy adult?

(FWIW, I think you're both incredible people who could bring that kind of a person into this world.)

As for the Dr. Mommy thing....

I've thought a lot about that-it's something that gets wrapped into the consideration about whether or not to go back to school shortly (which reminds me that sometime, soon, we should make some definite plans to get together and talk about it, since I've started to actually look at where my options are.)

I think, like most other major life decisions, this one deserves a lot of thought. I think not only have you given a lot of thought, but you've thrown into the mix a lot of things people don't often think about when approaching this choice.

And I hope that all of these plans go well.

[mouseman.livejournal.com]

More importantly, are you prepared to be a good parent, to care for, love and raise and empower a child to be a healthy adult?

That's the sentiment of what I was going to say! From what I've seen, I think the two of you have the potential to make fabulous parents, and that benefit far surpasses the potential risk (roughly, severity * liklihood).

[rivka.livejournal.com]

Thanks. What a nice thing to say.

I definitely agree that we'll make good parents - that's not something I think is particularly in doubt. But that's a different thing from saying that I'd make a good egg donor, if you know what I mean. We could conceivably be excellent parents of an adopted child.

[mittelbar.livejournal.com]

We could conceivably be excellent parents of an adopted child.

I'm sure you'll be as good with your adopted child as with your biological child.

[sashajwolf.livejournal.com]

I suppose that it's a good idea to start practicing my answers.

I've known people get good results with "Are you suggesting my parents shouldn't have had me?!" And unless you think they shouldn't - I've come across one person who felt that way, but only the one - I think there's no reason not to go ahead, beyond the practicalities of what you and curiousangel think you can cope with.

[rivka.livejournal.com]

I've known people get good results with "Are you suggesting my parents shouldn't have had me?!"

Heh. When I was a lot more disabled than I am right now, I actually had people say to me, "I could never cope with what you're going through. I think I'd kill myself if I were in your shoes." They never seemed to understand how profoundly insulting it was to suggest that someone else's life wasn't worth living.

[lizardling.livejournal.com]

O.o

dotdotdot. I think you're a better person than I -- if anyone said that to me, I would've attempted to wrap my hands around their throat and squeezed. A lot.

the value of life

[pir-anha.livejournal.com]

hm. i wouldn't say that to anyone but a very close friend of whom i know that zie understands how i mean it. but i have thought that when meeting some people, especially when they were very seriously mentally disturbed. i am not, however, saying that their life isn't worth living for them. i am not inside their heads -- i don't know how they feel about it. i am saying that i, personally, would not want to live that way. that i, if i could, would kill myself rather than live that way. which says something about my weaknesses and my fears.

and which is a very far cry from saying "kill yourself, you worthless slug".

...

as to having children if one has genetic defects -- i care vastly more about people's parenting abilities and them having children for what i consider "good" reasons than i care about their genes.

[brian1789.livejournal.com]

The possibilities of medical infirmities are not to be ignored, granted... but IMO your respective positive attributes far outweigh them. I think you'd make good parents... you have patience, are affectionate, and caring.

[papersky.livejournal.com]

Anecdotal datapoint: My ex-husband, who is 41, had hip dysplasia, which was treated with the hip to knee plaster, which worked, lo it cured him and his hips are fine. (He has a memory of the first time he saw rain, after the cast was off, because his mother was afraid it wasn't waterproof and so only took him out when it wasn't raining. This from people who had no car and lived in Lancaster, England, which has 300 rain days a year.) His niece -- you were saying it runs in families! -- who is maybe nineteen now, had the same thing, and it was treated by putting on a double diaper, and she is also fine. They checked Zorinth for it about a zillion times when he was born, but he didn't have it. I think you're right though, even severe dysplasias are treated better now and much less of a problem.

I think there are issues about pregnancy and disabilities, and I think you do have to think about them -- and look, you're thinking about them in a sensible way. My response when I was pregnant and strangers asked me was to talk about asthma -- yes, there's a chance he'll inherit it, they have good ways of managing it now. (In fact he didn't.) It sort of took the wind out of their sails when they were looking at my cane. A serious discussion of rosacea might have the same shutting rude strangers up effect. I don't know though, people in the US have different boundaries on that stuff.

I think you have a lot to give a child both genetically and environmentally. I'd have two disability questions, actually, if I were you, and they're both practical ones. First, is actually physically giving birth going to be a problem? Check with your doctor. My pelvis was better in pregnancy than normal. But make sure your midwives and other medical professionals are clued up, and most important make sure Curiousangel and any other birthpartners aren't afraid to tell the professionals things they need to know. The worst moment in my childbirth was a clueless midwife grabbing my bad leg in mid-contraction so she could check dilation -- no reason in the world for her to be that side, and they'd all been told not to, but she was sure she knew best. It was the only time I screamed in the whole 27 hours. She ignored me screaming totally. She could have done serious damage if my ex-husband hadn't stopped her, and I was in no state to be able to stop her. Have a Caesarian if you need one, but only if you really need one, it's a major medical intervention and takes a long time to heal.

Second potential practical problem -- is picking up the baby going to be a problem? I caused myself a lot of back problems from picking up a weight that started off at 7lb and got heavier and heavier. Again, think of good work-arounds, consider buying an adjustable level cot -- I would have if I'd had the money and if I'd guessed there would be a problem. Consider heights of changing tables. There's more lifting than I thought.

If you're feeling broody, I think you should go for it as soon as you've phudded. Why, you fill me with a desire to rush out and buy little booties for zir.

[rivka.livejournal.com]

Anecdotal datapoint: My ex-husband, who is 41, had hip dysplasia, which was treated with the hip to knee plaster, which worked, lo it cured him and his hips are fine.

Wow, that sounds a lot better than avascular necrosis of the femoral head. It actually is very nice to hear that it was something that worked for some people - it was a disaster for me, but maybe it wasn't as wrongheaded as all that.

My response when I was pregnant and strangers asked me was to talk about asthma -- yes, there's a chance he'll inherit it, they have good ways of managing it now. (In fact he didn't.) It sort of took the wind out of their sails when they were looking at my cane.

My mother got awfully tired of strangers asking why her baby was encased in plaster. Her eventual exasperated response has become a beloved family story:
Intrusive stranger: "OH MY GOD, WHAT HAPPENED TO YOUR BABY?!?!"
Rivka's mother: (looks down at baby) "Oh, it looks like she spit up a little. Thanks." (dabs at baby's chin)

I'd have two disability questions, actually, if I were you, and they're both practical ones. First, is actually physically giving birth going to be a problem? Check with your doctor.

I've talked it over with my orthopedist. He says there's no reason at all why I wouldn't be able to carry a pregnancy to term, and that I may be able to deliver normally. I do have a higher-than-usual risk of needing a C-section, but at least in his opinion it's not the sort of thing where they just automatically schedule a C-section and don't even consider a vaginal delivery. I probably can't have epidural anesthesia, because of my spinal fusion, so that's another thing to consider. I may have also difficulty carrying the extra weight of a pregnancy, especially since most of it would be centered over my hips. In preparation, I'm trying to (a) lose a little weight, and (b) build up the muscles in my back and legs.

The worst moment in my childbirth was a clueless midwife grabbing my bad leg in mid-contraction so she could check dilation -- no reason in the world for her to be that side, and they'd all been told not to, but she was sure she knew best.

Aaaauuugh! Did you have her killed, afterward?

Fortunately, I have more range of motion and less sensitivity to touch than I used to have... but I'll make sure to spell out the remaining stuff in my birth plan and make sure Misha knows to enforce it. Good suggestion, thanks.

Second potential practical problem -- is picking up the baby going to be a problem? I caused myself a lot of back problems from picking up a weight that started off at 7lb and got heavier and heavier.

The arm length issue is likely to pose problems. I won't be able to lift a baby in and out of a crib or playpen unless it has a lowerable rail. (Most standard cribs do, but portable cribs don't, and playpens don't.) I probably won't be able to carry a baby on my right hip because of pain, but trying to carry something on my left hip usually throws me off balance. I'll have difficulty carrying something and a baby. I expect I'll make a lot of use of slings (for baby) and backpacks (for inanimate objects I'm trying to carry along with baby). And of course, curiousangel and my other partners and friends will probably do a fair amount of carrying.

If you're feeling broody, I think you should go for it as soon as you've phudded. Why, you fill me with a desire to rush out and buy little booties for zir.

*grin* Thanks. That's really nice.

[papersky.livejournal.com]

Apparently the pre-plaster era treatment for dysplasia was to do nothing, which led to a lot of people lurching with one leg shorter than the other. I think plaster was one of those things that really worked for some and was therefore used in all cases as wonder-cure for a while. There are certain things that make me want to scream, and people made worse by medical treatment is one of them.

On lifting the baby: babies need a lot of lifting, and even if you can lower the side of the cot (we could) some of them don't lower completely, so you still have to lift four or five inches, which can be a lot to lift a weight over. Also, lowering ours took both hands at the same time at each end of the side of the cot. Look carefully at designs and do not allow grandparents to buy you one you didn't choose. It's only for a short while -- eighteen months or so -- but in that time the baby will need lifting every few hours. Slings are good, packs are good, for moving around, but the number of times the baby needs to come out of the cot for a feed or to be changed or just to be rocked is quite astonishing.

(Poor Zorinth had trouble sleeping. I used to sing him entire albums I'd memorised as a teenager. His dad once got all the way up to "49 men went to mow".)

Toddlers like to be picked up, but it's also possible to train them to climb up onto a lap from the correct side, or to snug up on the sofa instead. The problems from that age on are different ones.

Good luck with all of it.

[mittelbar.livejournal.com]

It's fascinating thinking about the practical thingies involved in kid-having. And awe-inspiring, how fast the little buggers learn stuff like climbing from the proper side and such.

I wonder if there are any product lines made specifically for parents with mobility issues.

[rivka.livejournal.com]

It's fascinating thinking about the practical thingies involved in kid-having. And awe-inspiring, how fast the little buggers learn stuff like climbing from the proper side and such.

I read once that children of disabled parents typically don't test limits in disability-affecting ways - for example, that children whose parents have mobility impairments rarely run away from them, but they might stay close by and have a horrible temper tantrum. If it's generally true, that's fascinating.

[papersky.livejournal.com]

Zorinth certainly didn't ever run away from me. Nor did other little kids I was looking after from time to time. I used to take some friends of his to the park all the time when they were in playgroup -- 2.5-4, and they used to run and run back, like relay races with me as the slowly moving goal. I never even worried about them running away. Little kids tend to accept things like that as being the way the world is. And when they do that tantrum stuff -- not that he ever did very much -- they want attention, and they know you can't run then they know they need to stay by you for attention. I wonder if there have been studies done on that. I don't know -- there seems to be very little attention paid to the semi-able, the people who have minor mobility problems but who aren't in wheelchairs.

[jinian.livejournal.com]

I wonder if a person with problems being touched in certain areas could wear marked clothes or paint the off-limits areas red so idiots wouldn't grab them.

[tammylc.livejournal.com]

Very well put, as usual. You have a real gift for laying out your thought processes and letting us all into your brain!

Good luck with the babymaking, when the time is right. And in the meantime, I recommend lots of practice. ;-)

[dedoc.livejournal.com]

*musing*

Had Sharpie and I thought about the varied genetic issues our two families carry... and heeded the well-meaning advice of some...

we wouldn't have John.

Those of you who've met him know what we would have missed.

So tell the busybody "prospective eugenicists" to get stuffed, sez I.

Thank you

[wiredferret.livejournal.com]

It's oddly heartwarming to know that even with all my whining, I'm not scaring people off childbearing. ;>

I think that thinking about it is the most important part of parenting/choosing to bear a child. You have good reasons, and I agree with you. After all, we are all carrying around little genetic timebombs, whether or not we're aware of them, and I think you and Misha are a step ahead if you're prepared for the adventure that is gene-mixing, rather than being surprised if you get anything other than your ideal child.

I don't know if I told you, but I was almost aborted. My mother was exposed to what they thought was rubella at precisely the fetal development age when it would have caused profound issues. Follow-up tests revealed it to be something else, but they thought about it. It gives me an interesting view. I can't say I would have argued with the choice, although of course I'm glad to be here. But knowing that (and my parents having the courage to tell me) is an interesting view-angle.

[wcg.livejournal.com]

Your children will be wonderful people. I look forward to knowing them.

[starstraf.livejournal.com]

Our friend K waited until the PhD was done to have kids - and with many many delays in that process got nerveous but didn't take long for them to conceive and they are now proud parents of a baby girl.

If you have concerns of things that might be genetic then you dont' want to wait much past the "magic 30" point where complications can grow.

As long as you are prepared to deal with a kid, and one with what you have or more so then why not. If you were not concerened or had not tought things thru then that might be a different story. (We have friends that are deaf and disabled and they have had a kid but are 'convinced' that the kid will be "normal" - the kid is showing signs of being just like parents but the parents are refusing to see the symptoms)

Also I think it is much more important to pass on healthy, sane, intelligent brain stuff then body stuff. A family history of depression, suicide, insanity and such is the number one reason I decided thate even if I wanted kids I would never have my own genetic kids

[arib.livejournal.com]

Starting a family is always a genetic crapshoot. By rights, and going from family history, I should be overweight, diabetic, suffering from massive food/environmental allergies, well on my way to my first heart-attack, and, if my grandfather's condition was heritable, missing almost all of my corpus callosum (yes, I've been waiting to use neuroanatomy in a Livejournal post for ages now... :-) )

So far, my only complaint is early hairloss, and that's really no big deal.

If my family obsessed over genetic combinations, they never would have had kids. You play with the hand you're dealt, and come up with the best thing you can.

You're a wonderful person, and any kid you have will be lucky to have you as a parent.

'nuff said.

[fourgates.livejournal.com]

I'm under the impression that, according to the studies, the biggest factor predicting a good outcome with kids, including those with all manner of disabilities, is the parents' eagerness to become parents. I for one have enormous confidence in you both.

Jeff

[elusis.livejournal.com]

I've had the same kinds of conversations with my husband, myself, and my mother (the latter being somewhat less productive than the former two). A child of ours is at risk for serious depression/anxiety problems (though we're both managing without meds at the moment), asthma, wonky teeth, nearsightedness or other eye problems, and weight issues. And, my mother had extremely difficult births (as in, nearly dying both times) with both of her daughters despite being late 20s/early 30s, with plenty of good nutrition and prenatal care. OTOH we've got very little history of breast or other reproductive cancers (prostate from my dad's dad and uterine from my mom's mom but neither seem to be troubling the following generations), no history of hair loss (cosmetic, but hey...) and rather a lot of intelligence, creativity, and talent genes floating around.

But at this point the phud comes first for me as well (since we didn't plan on reproducing until 10 years into the marriage/5 years from now, putting me right at 35-ish, I really ought to be able to get the bloody dissertation done by then!) and we're also having the conversation about whether it's more important for us to reproduce, or conserve our physical, financial, and time resources to take care of ourselves and pursue some of our dreams.

Regarding people who make rude comments... I like the approach of either calling them on it (e.g. "I can't believe you think it's OK to ask/say that!") or saying something really outrageous (e.g. "It's OK, I was experimented on by the Nazis so my problems aren't genetic.") Your mum's response that you quoted in comments is priceless. I've always fantasized about freaking people out when they ask "boy or girl?" by saying "we're going to let the baby choose when they're old enough." But I'm antisocial like that.