A little girl whose parents were pro-lifers. Want your thoughts/feelings on this.

Reply Sun 16 May, 2010 01:05 pm
You may have seen the pictures or not. There is a website dedicated to a little girl with a very rare disease which involves severe deformations of the face, we are talking very severe. To the point where when I saw the picture, and many others too, wondered "is this real"? Or photoshopped. It's real, bc there is that website by her parents telling her story.

I'm not sure whether to link to anything or say her name here, just bc she is a little girl and want to respect her. Didn't like the captions people were putting making jokes of her, but I did laugh. Maybe bc my feelings are very mixed on this, and am interested in more discussion on it.

The parents knew what kind of problems this little girl would face bc the doctors told them before she was born, when they still had a chance to decide to end the pregnancy or not. And they chose to go through with it, knowing full well how horrible things would be, what kind of suffering the little kid would go through (at least they knew she WOULD without a doubt go through much suffering regardless of how well things progressed and in best case scenario).

Now, I'm really interested in different opinions on this. Let's just assume from the get-go that this is NOT a discussion on whether pro-life or pro-choice laws should be in place. OK? Ok.

The issue here is more about personal feelings, that I am after. How do you feel about her parents choice? Have you ever thought about what you might feel, or general stance, say if you were faced with a choice like that?

My feelings are really mixed. Now that the child is alive, I want to respect her, bc it wasn't her choice to be born, she now has to live with this and she will no doubt have to face a lot of mindless meanness. Beyond that though, it would be my misdirecting any negative feelings I have if I focused on her.

I do feel a deep disguist and almost anger towards her parents. Let's just say, I wouldn't trust myself to meet them.

Reply Sun 16 May, 2010 01:29 pm

One thing I'm sure of is that we're really bad at predicting how we'd handle calamitous circumstances. This is one thing I have against living wills and the like. We often think that something horrible would be more horrible than it actually is.

I've worked with people with disabilities a lot in my career and have met some people who have really really horrible disabilities -- but they're actually quite happy.

There have been a lot of studies about this in the field of happiness research -- following up with people who predict they'd feel a certain way about something vs. when that actually happens.

And it's something I've experienced too -- I would have said it would be catastrophically horrible for me to become deaf, and it certainly was a painful experience that I wouldn't wish on anyone, but I emerged at the other end of that experience (becoming deaf as opposed to being deaf) as a pretty happy person. I adjusted.

So I get really antsy around any question of whether (objectively) people should choose to abort a fetus that will be disabled -- even severely disabled -- while also supporting the right to choose.

I do think that there are situations in which it's plain wrong to abort for that reason -- if genetic testing shows that the baby will be deaf, for example. I don't think it's wrong when it's known for sure that while the baby might be born alive but would live a matter of hours or days -- too much risk to the mother and emotional upheaval for the parents. There is a large gray area in between, though.
0 Replies
Reply Sun 16 May, 2010 02:36 pm
mushypancakes wrote:

I do feel a deep disguist and almost anger towards her parents. Let's just say, I wouldn't trust myself to meet them.

I don't know why you'd feel this way towards her parents - their opinions and belief system is different from yours. That's it. So your opinion and belief system is not the issue - theirs is. If you believe that people should be allowed to have their own beliefs, and if they operate within their beliefs, then you can't really decide that any decision they make is wrong. It's just wrong for YOU.

They may have grown and learned from having her, and the little girl may develop into a Helen Keller type of person.

You're imposing your belief system onto them and judging them in the process.
0 Replies
Reply Sun 16 May, 2010 03:11 pm
I think that had I been in the birth mother's place, I would have had an abortion. In fact, I just looked through one of my favorite quilting pattern books. The woman who wrote the book has four children, which I do not approve of. The first child is severely retarded. Had I severely retarded child, I would not have had another. I would have tied my tubes.

On the other hand, there are things about child rearing that I am now more accepting of then I was when my own kids were babies. There are also things I am less accepting of, mainly, parents who do not educate their kids, do not monitor their television viewing and do not read to them.

My daughter-in-law is a different mother than I am but I have come to appreciate the differences between us and I think she is doing a good job raising her girls.
0 Replies
Reply Sun 16 May, 2010 04:33 pm
My stepson has an eighteen year old daughter. She is blind (eyes are fine, it's the connection to the brain that is the problem). She is microcephalic, and has just about no cognition. She cannot eat, and is fed by a tube.

When she was an infant, the doctors told the parents that if the child could get past her 2nd birthday, she could live indefinitely. For the first couple of years these parents were in and out of hospitals with their daughter with one or another serious medical problems.

At any particular time, the parents could have just looked the other way. They chose not to, but decided to do whatever they could to save the child.

So now they have a full size person who has to have EVERYTHING done for her. There was a problem with the doctor during the child's birth. The parents won a malpractice suit, so at least they have the wherewithal to care for her.

Nevertheless, I feel very strongly it would have been better if they HAD looked the other way when the girl was a baby. Years ago, without the medical "miracles" that there are today, she never would have lived. In terms of quality of life, I question as to whether she is living as a human being, even though she is alive.

So here we have an example where we are not talking about an aborted fetus, but a live being who has little quality of life.
0 Replies
Reply Sun 16 May, 2010 05:23 pm
First, let me say that I am in agreement with what Mame wrote.

Second, I agree that such a decision is very hard and different people would have varying opinions and decisions on this. I have to think at the other end of the spectrum and consider those who are born healthy and through some catastrophe or accident end up the same as the children that you speak of that someone is making a decsion to abort or not abort.

I am against abortion for many reasons and although I could not be certain of my actions unless I was actually in the situation, I would have to say at this moment that I would not choose to abort.

I have met many handicapped people and children and really believe that they are happy despite their deformities and handicaps. You see, they don't consider themselves any different than anybody else.

If someone is so quick to abort because of this, I would hate to see what the fate of their aging parents would be if euthanasia was legal.
0 Replies
Reply Sun 16 May, 2010 06:17 pm
I don't know how I would feel, much less what I woul do, should I know that my unborn child will be severely disfigured or disabled. That hasn't, and now won't, happen to me. What I do know is I wouldn't pass judgment on a pregnant mother, no matter what her decision should she abort or not abort a fetus. We are all different, make different decisions.
Reply Sun 16 May, 2010 06:35 pm
Is the problem with the girl solely facial disfigurement?

I don't know of the case, so I don't know if she has other physical, mental problems.

If it is a matter of appearance, where do you draw the line?

Where does disfigured end, and very very ugly begin?

Would you terminate your pregnancy if you knew your child would be very very ugly?

What about just very ugly, or even just plain ugly.

What's the rest of the storey with this girl?
0 Replies
Reply Sun 16 May, 2010 07:01 pm
I understand what you and Mame are saying, but there are situations where I would pass judgment. I already gave the example of a fetus being aborted solely because of deafness -- I do think that's plain wrong. I'd also pass judgment if a fetus was aborted solely because it was female, to give another example of where I'm comfortable saying "sorry, that just ain't right."
Reply Sun 16 May, 2010 07:26 pm
A great many birth defects carry mental retardation with them. Remember how a fetus forms: two sides come together and meet in the center, which is why you sometimes see people with two different eye colors or women with different breast sizes or crooked chins.

One of the most benign birth defects is a cleft palate, which means that the two sides of the head fail to meet in the center. WHile most of the time, just the palate itself is involved but the opening can extend into the brain.
0 Replies
Reply Sun 16 May, 2010 07:44 pm
sozobe wrote:

I understand what you and Mame are saying, but there are situations where I would pass judgment. I already gave the example of a fetus being aborted solely because of deafness -- I do think that's plain wrong. I'd also pass judgment if a fetus was aborted solely because it was female, to give another example of where I'm comfortable saying "sorry, that just ain't right."

I know, I know. I'm just saying that it's between me and my doctor. I don't know what I'd do in any of these situations. Difficult decisions. But, I wouldn't abort just because a child would be deaf. No! I may, though, considering the conditions Plainoldme described.
0 Replies
Reply Sun 16 May, 2010 08:29 pm
I think I know of the girl you're talking about -- The Learning Channel did a story on her. She had treacher collins syndrome.

In her case the disfigurment was severe -- sometimes it isn't. Usually cosmetic surgery can correct it without much trouble. I think that if I were pregnant, recieved that diagnosis, did some research, I might have made the same decision these parents did.

This case was different. This girl went through surgery after surgery after surgery just to make her body function -- none of it was cosmetic/reconstructive. I remember from the TLC program that the parents talked about how much pain she was in and how she dreaded further surgery and how she'd had so many sedatives that sedatives no longer worked for her. It was awful to see/hear.

But then she'd go and wrap her arms around her mom or dad, looking for comfort, and you could see how much she loved them and they loved her.

I can't say for sure what I would have done, probably had the baby. But I think medicine can go too far trying to save some people and knowing the pain in store for the kid I probably would have refused life saving measures.
Reply Sun 16 May, 2010 09:28 pm
Thanks Boomer.

Now I remember this little girl. I've seen videos of her (just watched a couple of them again to update myself)

She's 7 now.
She is intelligent. Most people with Treacher Collins Syndrom do not have impaired intelligence.

She's in school in regular classrooms, from what I can see.
From the neck down, she is just like any other 7 year old girl.
Well, she does have to be fed through a tube, but sitting in the cafeteria with the other kids, she likes to taste foods by rubbing a bit of them against her lips and tongue.
She can hear, and communicates to others through sign language.

None of her classmates take any particular notice of her, and she has friends just like any other little girl.

Judging by her interactions with classmates, her teacher and her family, she acts as though she's as happy as the next child.

Her face obviously makes you do an involuntary double take at first. After watching her for a while, I really didn't pay attention to her face beyond the fact of learning how brave she's been with all the surgeries and pain she's had.

I think we should ask her if she would have wanted to be aborted.

Somehow, I think she's enjoying life too much to say she never wanted to have been born. Even with the pain she's had to go through, and will go through in the future.

She's not even really really ugly. She's got facial features that are very different from other people we see every day, that's all.

I don't want to sound like a pollyanna, but, she's really not all that bad, once you look at her for awhile.

She's a pretty little girl, and she's human.
0 Replies
Reply Mon 17 May, 2010 08:02 am
More than 20 years ago, there was a book with a title similar to The Long Dying of Baby Andrew which dealt with the ultimately unsuccessful heroic efforts put into the life of a premature baby.
0 Replies
Reply Mon 17 May, 2010 11:21 am

Yes, that is the girl I was referring too.

And yes, I am aware that my feelings are a result of passing judgment. Which is part of the reason I was so interested in hearing others views and feelings on it, because it made me a bit uneasy how strong my feelings on it were.

And I totally understand where you are coming from, Soz, in regards to it going the other way - people choosing to abort bc of say, the doctor telling them their child will most likely be deaf, or a cleft palate. Etc.

But I have worked with many disabled people myself as well, and families of, and sometimes I do wonder and feel that maybe there is something wrong with the current mindset where, people sort of thinking that we must under all circumstances do everything possible to save a person's life....regardless of quality, regardless of the amount of effort taken and also - money, sorry if that is distasteful to mention - spent in hospitals and special programs and a lifetime of supporting a lot of these people. That doesn't even take into account how much suffering a person may go through, and oftentimes - more times than "miracle, miracle that" - somebody is suffering.

It's such a fine line there bc in the case of a fetus, or a child, or someone who is not able to make life choices for themselves...is it ever too much? Don't you think that sometimes it might be a little selfish on the parents parts?

I guess that is part of it for me. Is my passing judgment on the parents wrong? I don't think so. I would never go out and cause trouble for them, never do anything to cause harm or pain. Wouldn't even say anything except say to discuss it here and maybe with friends sometimes.

But is it really so wrong to think that maybe, in an over populated world where people are often expecting not just acceptance but support and special effort for their choices by others, use of resources - that there be some ability to at least talk about this without being looked at like a monster to for sometimes thinking "maybe they shouldn't be allowed to make that choice, and they are being cruel".

It's just feeling right now, I understand as it stands - the right to decide about an unborn child in your body is regarded almost as a sacred right. I don't thikn that is bad. I do think some of the choices aren't always wise and from purity of heart! And this is one where I do feel that.

Obviously these aren't very popular views, and especially not for someone that has done work as I have for as long as I did, but I know I'm not the only one. Most just keep it to themselves.

Reply Mon 17 May, 2010 01:20 pm
I totally respect what you're saying mushy. I for one think it great when someone says the unpopular thing. Yes, other people are always thinking the same when you give your opinion, but don't say anything. Sometimes, once they hear that one brave soul, it gives them the courage to agree out loud.

I have a lot of unpopular opinions about birth, and children. They aren't evil opinions, they just aren't what people are "supposed" to be thinking in this "enlightened" age.

That's what I've always admired about you mushy. You state your opinion, even when it's unpopular, or hard. I can't think of any specifics right now, but I know that on more than 1 occassion, you have changed my mind about something.

I shared this story a while back, so I'll try to make it as short as possible.

There's a rent house across the street from me, with different guys moving in and out over the years. Last year, a guy that had just moved in came over to introduce himself. Seemed like a decent sort (I must say)...nods to Ed Grimley.
Anyway, the 2nd time we had a neighborly sidewalk conversation, it somehow came up that he had, I don't know, 2 sisters and a brother. Then he launched into how he only had one sister now, the other had died.

"Oh, I'm sorry...."

Turns out this one sister had been born when he was only like 10 years old or something, and had lived only a matter of days....

"Oh, I'm sorry....that's sad...."

Here we go....
Mother had been advised to have an abortion early on in the pregnancy, because the fetus "did not have a brain stem" his words, not mine.
She was going to have the pregnancy terminated, but God spoke to her, saying this child would live, yadda yadda yadda.
He went on to say that "none of the doctors, except one, a christian (why was I not surprised to see that coming) could believe the baby was alive"

Well, obviously there was a bit of brain stem, since the heart was getting the message to beat, and deciding to be unpopular, said so.

It was immediately apparant that I was not to have said so, I mean, that was so mean of me to point that out.

Anyway, the baby, if you can call it that, since there was no brain, died shortly after, never having been really alive, and I thought that was incredibly cruel for all parties concerned. That part I didn't say.

The mother figured out later that when God said "this child is going to live" he meant this guy himself, as he later got on drugs and overdosed and everything. He was who God was really talking about, but just happened to say so when the mother was pregnant with this non viable fetus.

Well, I couldn't keep my mouth shut, and asked "If God was talking about you, then it seems your mother put everyone, including your 'sister' through a lot of needless suffering"
He didn't come over to chat again, and of that I'm glad.

I don't know what I'm getting at, except to say it's a case by case situation.

To have that thing without a brain was wrong, IMO.
This little girl? Physical pain aside, she's a thinking human, and based on the syndrome she has, that wasn't the issue really.

I guess the having the power to think makes the difference for me, not the fact you're born with flippers instead of arms.

Then, where does one draw the line as far as thinking ability?

I don't know.
I just don't know.
0 Replies
Reply Mon 17 May, 2010 01:30 pm
No, it's not wrong to pass judgement on people, especially when you don't say anything to them - I was just trying to get you to see that your belief system is causing you to say you're disgusted with them. That's all. They have their own reasons for doing what they're doing, and that's okay, too.

I realize I didn't answer what I would do in that situation... I would likely NOT have that child you described, for several reasons. One is that maybe I wouldn't be strong enough to help them they way the would need it -- I don't know that I could deal with what's coming their way on behalf of my child; another is that I am too selfish - I might feel burdened or trapped, and I would really resent that. I don't know what really would result if I did have that child, but this is what I would think would happen.

I am selfish, I realize that. But that's okay, too. Know your limitations, right?
Reply Mon 17 May, 2010 01:40 pm

Mame reminded me.
I forgot to mention that the person I am today would not have had that child either.

#1, I never wanted children, and feel I am a huge success story in that I have succeded in never getting pregnant.
If I didn't want, couldn't care for someone in this condition, the odds of finding someone who would are nil, in my book.

However, that said, these parents were prepared to do that.

0 Replies
Reply Mon 17 May, 2010 01:44 pm
It sounds like the baby was anencephalic. Such babies have brain stems, which are the oldest part of the brain, but do not have a forebrain or a skull. Anencephaly is a failure of the neural tube to completely close and is related to spina bifada, a situation in which the neural tube does not close in relation to the spine. These children usually do not survive birth. If they do, they are deaf, blind and insensible to pain. They generally remain alive for a few hours.

Anencephalic fetus made up most of the practice of Dr. George Tiller, the physician murdered for performing late term abortions.

Perhaps, some of you remember the delight certain members of this forum took in describing late term abortions. I never researched the procedure but I always felt the description sounded like a misconception based on anencephaly.

0 Replies
Reply Mon 17 May, 2010 01:46 pm
I think Mame just highlighted an important distinction. As parents, we may not be able to handle raising a child with such problems. A decision for terminating the pregnancy may be based on the limited abilities of the parents rather than on the child's hardships from the disability. This is a very tough issue.
0 Replies

Related Topics

  1. Forums
  2. » A little girl whose parents were pro-lifers. Want your thoughts/feelings on this.
Copyright © 2024 MadLab, LLC :: Terms of Service :: Privacy Policy :: Page generated in 0.03 seconds on 07/17/2024 at 04:07:58