Brave, Wonderful or Just Plain Irresponsible?

by Britgirl on December 4, 2009

This link was sent to me by a reader some time ago, asking me what I thought of this situation so I thought I’d share this for your childfree thoughts and views.

World’s Smallest Mother Risks giving birth

In brief Stacey Herald, called the world’s smallest woman, is “risking” giving birth to a third child. Reading the article you might be forgiven for thinking she’s a heroine… after all  Mrs Herald suffers from Osteogenesis Imperfecta, which causes brittle bones and underdeveloped lungs, and means she failed to grow. She’s 2 foot 4 inches, can’t hold her daughter, relies on her husband to do most things around the house. She has a genetic disease. But despite it all, despite doctors telling her it would be risky to have more children, she’s not only pregnant with their third, she wants more.

Said Mrs Herald – ‘All my life my parents had told me that I could do anything. Then there were these doctors telling me that we couldn’t be a complete family. It really hurt.’

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{ 33 comments… read them below or add one }

Lurker December 5, 2009 at 4:54 am

I can understand her wish to be respected for the desire to have children just like so many others. Her handicap should not be the reason for a lesser life.

Still I ask myself why so many parents let their need to compensate become a burden for their future children. If you have a serious chronic disease with pains and other burdens, why reproduce so you have to stand and watch how your child goes through the same or worse difficulties?

Is it a desire to show how you could do what everybody else thought you could not? Is it because you hope and believe that you will get offspring without the same genetic problems as yourself and then see someone get the chances in life that you could not have yourself?

I dont want to sound cynical and I can understand the women´s wish to become a mother. It should also be room for any human variant, handicapped og not. Also it does not feel right to be a judge in a case like this. But I cant help to think of it as selfish because the high risk of such child to inherit the same trait as her sick mother.

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Loinnir December 5, 2009 at 8:31 am

“They’re a great gift to the world,” she says of the babies she has and plans to have. Why, thank you, Mrs. Herald. It’s not about the children and their health; it’s about what she’s giving to us and the lucky, lucky planet. In other words, it’s all about her. She may have gotten short shrift in terms of physical stature and health, but she has ego to spare, and, unfortunately, she’s not afraid to inflict it on her family.

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Misanthropic Hermit December 5, 2009 at 7:18 pm

I have no problem judging her; I think willingly passing on such disorders is nothing short of cruelty. So, that’s one vote for “just plain irresponsible”.

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flamencocat December 6, 2009 at 2:23 am

My sister, the only one of the three of us who really wants kids someday, has lupus. Lupus is a chronic disease, and lupus is mainly affecting my sister’s blood. She probably COULD get pregnant, but it would be a very high risk pregnancy, life-threatening even. So she said she’s willing to adopt (she’s 17, though, and has a long time to think about all this…hopefully…as long as she keeps her pants on…). I told her I’d still love and spoil her adopted children as if they were my biological nieces and nephews.

Why didn’t adoption ever cross this woman’s mind?

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proftlb December 6, 2009 at 10:42 am

I’m now happily CF, but started my adult life as someone who wanted children but has a serious neurologic dystrophy. Long before I realized that I was quite happy with life being just SO & I, I made the decision to not have children due to the possibility of passing on this illness, not to mention the severe limitations it would place on my ability to care for a child (ruling out adoption as well).

Was this an easy decision – hell, NO. I could even completely understand someone making the opposite choice. Goodness knows the genetic component is inconclusive for many diseases, so someone deciding that it was fairly low risk for an initial pregnancy wouldn’t be surprising. However, to continue having more biological children after her daughter was diagnosed is, to me, unfathomable. Count me as a strong vote on the plain irresponsible side.

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Asp December 6, 2009 at 2:05 pm

This is petty, I know, but this bit makes this woman really hard to take seriously (for me, anyway):

Said Mrs Herald – ‘All my life my parents had told me that I could do anything. Then there were these doctors telling me that we couldn’t be a complete family. It really hurt.’

“All my life my parents had told me that I could do anything. Then these evil teachers began telling me my grades were not good enough to get into Harvard! It HURT! It’s NOT FAAAAIIRR!!!”

I am not a shrink or anything, but my guess would be that this woman feels she has something to prove. She has to prove to the world that she can do everything “normal” people can do, despite her handicap. Well, that’s fine and dandy, but she seems to forget that just because you CAN do “x” doesn’t mean you MUST or even SHOULD do “x”.

I also can’t help but wonder, setting aside the risk of her children inheriting her condition, what if something were to happen to her while giving birth? I mean, pregnancy and childbirth are not risk-free even if you don’t have a genetic disease. Is she prepared to leave her children without a mother to prove her condition is no handicap?

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Bravewolf December 6, 2009 at 7:07 pm

I think it’s overwhelmingly selfish to have a child when you know you are at high risk for passing on a serious genetic problem. I think people who do this are wastes of skin, right along with the people who die giving birth to children they know will kill them. It’s not courage, it’s not sacrifice, to me it’s a massive ego-stroke attention getter.

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Dorian Gray December 7, 2009 at 5:17 am

Along with the plain old “I simply don’t want children”, another reason I have for not having any is because I have a genetic disease. It took doctors 21 years longer than it should have done to work out that I had it, and by that time all of the serious damage, which could have been minimised as a child had been done. At times, life is very painful and restrictive. I have a 75% chance of passing this on to a child. The condition could kill a pregnant woman and her child at any moment and without warning. Why would I want to be so stupid and selfish as to run that risk?

Geez, I’m happy enough in my own skin that I don’t need to kill another human being to get validation for myself.

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Anne December 7, 2009 at 8:05 am

I always thought that giving birth it’s an unselfish act, but giving birth when you know that there may be problems – it’s selfish.

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Lee December 7, 2009 at 4:42 pm

I cannot presume to know what this woman’s life is like or what her psychology is because of what she has endured. But, I will say that it is ethically wrong to make the decision for another human being around what kind of suffering they can tolerate (physically or mentally). It is not her choice to make. While she seems to have adapted to her physicality that does not mean that her children will do the same or would want to.

I only speak as a child free person, but if I were to have children, I could not live with myself having knowingly passed down a gene that would cause them a moment’s suffering, let alone a lifelong disability.

There also seems to be an element of spectacle around this story that I find troubling. American cable television is rife with stories like this one, glorifying pregnancy for the sake of pregnancy–handicapped women, mentally ill women, homeless women, obese women, elderly women. There is something profoundly wrong with a society that encourages women to have children without giving a nano-second of thought as to the quality of life of the child. More fodder for reality tv. It’s truly sick making.

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Christine December 7, 2009 at 6:05 pm

In response to: Is it right to risk passing on a congenital disease to your child just because you want to have one?

In most cases — absolutely not. But in some, maybe. One example I can think of is deafness. For hearing people being deaf is disability. But for (many) deaf and hard of hearing people, “Deaf ” (with a capital) is a culture and sign is a language. In fact, deafness is considered just a difference in human experience and not in any way a disability.

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Kat December 8, 2009 at 11:56 am

I don’t know that I agree with this. I have a deaf cousin, so I know they cope admirably, but life is tough enough for most people without any sort of disability. I guess a child won’t miss what it doesn’t know, but it certainly restricts their human experience. Is that fair? Given the choice, what do you think the child would choose?

I can’t agree more that rolling the dice on a genetic disorder is cruel. If you truly loved and considered the child, why would you deliberately inflict pain and suffering on them? To make you feel better? To vaildate your existence in some way? To have a soul mate? All I hear is me, me, me… and that to me, is incredibly sad.

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Miss Fanny December 8, 2009 at 3:22 am

How about knowing that you have emotional/psychological problems/grievances that you know will never be resolved/cured? Would you want to pass on all of these on to a child?

I had a tyrannical grandmother who inflicted so much emotional blackmail on all of us. Her daughter (my mother) was the total opposite, never had that that side in her. Unfortunately, I know that I would be a control-freak mother, like my grandmother. That’s one of many difficult reasons why I am CF. I know myself too well.

As for the woman in the article… Unbelievably irresponsible. Hate to sound heartless, but she should not have been allowed to do this, especially as she seems fully aware of all the implications of her condition. Just terrible.

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Xena December 8, 2009 at 10:48 am

I think she’s usurped Octomom as the poster child for pro-natalism. In those pictures she just looks like a big pregnant belly with arms and legs. Too bad she has a head, but at least she’s not using it.

But seriously, I certainly don’t look down on her for having a medical condition, but this story perfectly encapsulates all of the most screwed up mentalities that so many women embrace from rampant pro-natalist society:

1. I would rather die than not be a mother
2. I don’t care if I leave my children without a mother
3. I don’t care that I can pass (and have passed) on a severe condition to the child

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Soldatka December 8, 2009 at 11:48 am

We’ren all mixtures of genes, and to say that we wouldn’t want to pass on a gene that would cause a moment’s suffering is exaggeration, in my book. My parents probably passed on a gene for poor eyesight, which makes me fall downstairs even without the assistance of alcohol. They definitely passed on genes for being short. My father may have passed on a gene for being prone to heart disease but we don’t yet know whether that has popped up in my genome too. A gene that protects from one disorder (malaria) can cause another (sickle cell anaemia). The gene for CF also affords protection against typhus. And so on.

I would not want to deny someone’s feelings of wanting a child, which, I am sure, are every bit as strong and genuine as my feelings of NOT wanting to do so. However, bringing a child into the world with a SEVERE and heritable genetic disorder isn’t a kindness, in my book, especially if it is possible to screen for such a disorder. Once your child is here, it also isn’t smart to risk your life and possibly leave that vulnerable child motherless because you want another difficult and life-threatening pregnancy.

She seems to have a point to prove about transcending her disability by becoming a mother of a large family. Perhaps she would prove her point better by being the best mum she can be, i.e. not a dead one. We all have our limitations. Sometimes the wise choice is to accept we have them and make the most of what we do have.

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ellie December 8, 2009 at 11:55 am

I don’t trust myself to expand without the use of harsh expletives so I’ll just succinctly answer your question: selfish and irresponsible. Like, beyond the pale.

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ellie December 8, 2009 at 12:10 pm

Incidentally, that is what every pregnant woman, ever, looks like to me. Just one giant, bloated belly, and a self-satisfied grin atop it. Ugh.

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Dorian Gray December 8, 2009 at 12:15 pm
Lee December 8, 2009 at 6:18 pm

Forgive me for exaggeration. No one ever does that here do they. ;) I happen to feel very strongly about people making ethical and responsible choices around reproduction(I’m dreaming). While I’m sure a person’s desire to have children can be very intense, my equally strong feelings about my child-free state does not carry the potential to cause someone harm.

What I should have said for the sake of clarity was genetic disease as opposed to gene. I certainly don’t define suffering as poor eyesight (which I have and attribute to too much reading) and I don’t consider being less than average height being a negative thing (and there is a big difference between being “short” and being two feet tall). The point I was trying to make and perhaps didn’t do very well (I’m not a genetic scientist and don’t know how many genes are required for each illness to manifest), is that I personally would not want to pass on a genetic disease (as the woman in this story has done) that I know could cause physical or mental suffering should it manifest in my child. I have a friend who is a genetic counselor. She meets with parents who have a history of either mental or physical illness somewhere in their family tree such as Bi-Polar, Parkinson’s or Huntington’s, certain types of anemia (to name a few). She discusses the odds of them passing the illness down to their child (children) and how that would/could manifest in their offspring. While they are not forbidden from reproducing those that choose to do so, know that if the genetic illness, which they carry, turns up in their child, that child will suffer. I personally, would not choose to reproduce in that situation and would question the thought processes and ethics of those that do. Another example of a genetic disease is Mediterranean Anemia. In Greece, two people who both carry one gene for that type of anemia are forbidden from marrying and everyon in Greece must be tested for the disease prior to granting a marriage license.

My overarching point was/is that people’s wants and desires to reproduce should not supersede the right of a child to be born free from disease if it can be prevented, which in the case of this woman it most certainly and obviously could have been.

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Soldatka December 9, 2009 at 6:44 am

Here’s a thought: what do they do in Greece if two CF people carrying the thalassaemia gene want to marry? Or two carriers who don’t want to marry have a kid anyway?

Not getting at you…just wondering how far the state should be allowed to intervene. It raises some interesting questions.

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Mia December 9, 2009 at 12:36 am

She already has two children. What does she tell herself to justify doing this when it would be such an added strain on the family and possibly take the mother of her current two children away from them? Her first duty is really towards them, and she needs to be wise, realistic and responsible. She needs to be able to be content with what she has because having two children means that she ‘has the world’ already.

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Loinnir December 9, 2009 at 3:10 am

And what about Dad? How much does a “trainee priest” make, anyway? He’s as much to blame for this disaster-in-the-making (or should that be “disaster-in-the-made”?) as she is. Thoroughly irresponsible, the pair of them.

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Miss Fanny December 9, 2009 at 6:46 am

… as my husband used to say, when he was trying to talk me into considering a baby: ‘Think of the benefits you can live on…’

Jeez, what a story this is. It’s tragic that it’s real.

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Lee December 9, 2009 at 5:38 pm

In Greece, it’s not a state law, it’s a restriction imposed by the church. The Greek Orthodox church will not marry them or grant them a license to marry because if they have children (which many people in their culture do as they are very family oriented) their child/children may die an early death. If two people who both carry the gene knowingly choose to have children outside of marriage granted by the church and their child dies young–that’s on them. The state can’t legislate against stupidity (as the saying goes, there is an ass for every seat) and since it is a question of morality/ethics and because apparently most people in that culture want to marry in the church, by the church imposing a test requirement and refusing to grant a license to a couple who both carry the gene they increase awareness of the disease. Those who plan to reproduce will at least think twice. In my friend’s generation (he is 43) he is not aware of anyone in his circle who reproduced when both carried the gene. However, he had a classmate whose parents unknowingly both carried the gene (they married before testing was mandatory) and their son (my friend’s friend) who developed the anemia died when he was 16. I’m veering well off topic here, but I’ll wrap this up by saying my feelings are the same about IVF– it is a question of morality and ethics. Doctor’s take an oath to do no harm and by implanting fertilized eggs that result in the likes of an Octo-mom or a soon-to-be geriatric mother, they are most certainly knowingly creating a high-risk situation for the child, which as individual physicians they have the right to refuse to contribute to. The child may be born healthy (or not) but at some later date either end up a young orphan or a ward of the state, due to unfit parenting. I would hope that someone intelligent enough to be granted an M.D. would posses the capacity for critical thought and the ability to perform scenario analysis to realistically assess the situation–since obviously some parents do not. But, apparently, at least in the U.S., most physicians won’t turn a patient away, because at approx 25K a pop their priority is the worship of the almighty dollar. They’ll refuse to perform abortions on moral grounds, but they won’t refuse to impregnate a 60 year old. By all means, rock on….

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Lee December 9, 2009 at 6:18 pm

As others have said, I can’t help but think that this woman’s desire to appear “normal” was a huge component in her wanting to have children. I would think that this man wanting to have children with her made her desire even more intense. Like many women, she may have succumbed to being chosen to be the mother of a someone’s children. It’s done now, but I hope for everyone’s sake that because he is studying to become a minister he will stand by the family he helped to create and not piss off at some point and leave this woman in the lurch with her disability and her disabled child/children to care for. Sigh.

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Christine December 9, 2009 at 9:50 pm

Kat:
I see your point totally. I am severely hard of hearing and I cope in the hearing world, too. Your cousin is like me, right? He lives among hearing people and does not sign? I don’t sign — I lip read and I work and live with hearing people.

People who live in Deaf Society mostly spend their lives living/working/being friends with/married to other Deaf people. They don’t consider themselves disabled at all — whereas I do. They actually don’t feel their Deafness restricts their human experience in any way. There language is no less a language than ours — English in this case.

More can be found here: http://tinyurl.com/yayvmhg

Sorry to hijack the thread — I just don’t think I explained Dead Culture well at all.

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Kat December 10, 2009 at 3:31 pm

No problem. My cousin is interesting in that she became deaf at five, after an illness (just what, I don’t know). So she had learned to speak, although her speech is not great, and she could lip-read so well that we often forgot she was deaf when talking to her – and wondered why she didn’t answer when we were turned away from her.

She did learn to sign, but not until later in her childhood. She’s now married to a “normal” guy, and has two kids of her own. I don’t know what she does for a job, as she moved to South Africa with her man, and I only hear about her through family updates.

As I said, you don’t miss what you don’t know, but to go from being normal to suddenly deaf must have been terrifying for her. But she coped wonderfully, as I’m sure you do … you both have my admiration.

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og217 December 10, 2009 at 9:33 am

Sooo glad that us tax payers get to finance this woman and her defective litter. I think its safe to say she doesn’t work and her husband makes a pittance, so the financing burden of this repulsive -looking “gift to the world” is on us, eh? Sooo not what I asked Santa to bring me for Christmas – a mutilated dwarf popping out more of the same. Ack.

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HulaGirl March 10, 2010 at 3:05 am

My sentiments precisely. Well said!

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Robin December 10, 2009 at 2:41 pm

I believe people need to be responsible when taking on having a child and this does not seem responsible. Like myself, I don’t want kids but then also my husband doesn’t have a job and I work 35 miles away from home, I would never do it, even if I changed my mind because it’s not a situation I would want to bring a child into.

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SwissBarb December 11, 2009 at 2:45 pm

I think this is shockingly selfish and irresponsible.

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roxetterachel December 12, 2009 at 3:05 pm

It is so self-centered and selfish to feel it necessary to replicate oneself in the first place. Adding in health complications that put the baby and mother in danger is even more ridiculous. I have no sympathy for these women, rather harbor feelings of disgust at their plights.

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praveen January 19, 2010 at 2:55 am

hi britgirl, firstly, nice work u have going here.
secondly, on whether an individual is brave wonderful or plain irresponsible, is all a matter for individual opinion. in truth, each individual changes world history, in ways that are unfathomable.. genetic lack in one area is no disqualification for birthing the next einstein or music genius or mathematical prodigy.. Love ,is finally what Really matters in life.. who are we to judge with our limited understanding of creation ???

one feels that one should be loved, honored and treasured for what one is.. just that..

and maybe your blog vision being to put things just like it is , should promote more objectivity than promote discussion on such lines.. think that your blog will achieve much more and help a lot of people …

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