Mom of Conjoined Twins: No Regrets - VeggieBoards
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#1 Old 09-26-2011, 09:43 AM
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We already have an abortion thread about a woman's right to an abortion. Here's a thread for a woman's right to not have an abortion.

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Disregarding medical advice, critics, and even the scientific odds placed against the viability of her unborn babies, Amanda Schulten of Marengo said she just had to go with her heart.

[...]

The babies, sharing one heart as well as other vital organs, were born at the University of Chicago Hospital and have remained there since. Schulten is staying across the street at the Ronald McDonald House to be close to her daughters, whom she has named Faith Rosemarie and Hope Lillian.

The full article goes on to state that the babies have a heart defect that cannot be fixed; only the symptoms can be treated. They also have undeveloped lungs, due to the compressed space inside their chest. They cannot breath without assistance, nor do they seem to be able to suckle. The longest any conjoined twins survived with one heart was seven years.

I'm rather uncomfortable about this. I wonder how much agony these children will suffer in their short lives.

The mother had her right to make any choice she wanted, and I won't disagree with her right to make a choice. The freedom to make a choice is the freedom to make a choice other individuals would not make, even choices many would consider to be the wrong choice.

Yet I'm also disturbed by those who would argue that abortion is the best case for any medical malformation that's superficially similar. There will always be disabled fetuses, and many of them can have a long and happy life. Heck, most of us probably have some bad genes, yet we'd probably mostly agree that we want to be alive.

At what point are we advocating an eugenics world outlook, and at what point are we selfish for wanting to bring a new child into this world even when circumstances suggest against it?
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#2 Old 09-26-2011, 01:43 PM
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You can't really understand until you've been close to a child (or children, in this case) with multiple, severe disabilites. I'll be the first to admit I really didn't bond well with my daughter until she was about 2. Her first 2 years were so crazy and rough. She almost died several times. We even had her on hospice at one point (she pulled out of it on her own). I was adamant for the longest time that if I could go back in time I would have let her go at birth. Well....now I see the happy, wonderful little girl she has become and I can't say that anymore. She's had bad times, but her overall quality of life is very good. You can see it in her eyes. I'm not sure she suffers from the disability in and of itself. For those of us who have always been fully functional we think to be that disabled would be hell on earth. But she is without a doubt the happiest kid I know. She doesn't piss and moan about stupid stuff like my son does. She doesn't whine when she doesn't get her way. She sometimes throws tantrums to get her way, but if we say no, she drops it.

My daughter isn't expected to live long. She's already outlived over 75% of her peers. The vast majority don't make it to early adolescence. She won't ever walk or talk. She can't lift her own head or swallow her own spit. It's sad sometimes to think about it, but she's not a wasted life. If nothing else, she's taught everyone she knows a little something about life in general. Her brother is 100 times more compassionate than other 6 year old boys. I've learned that I'm stronger than I ever thought I was. Her grandparents realize they can love a child with a disability as much as their healthy grandkids. Her nurses love coming to their job every day. She reminds them why they got into nursing in the first place.

Suffering is relative. There will come a point when I discontinue my daughter's care. When her body is done, I will let her go. In the meantime, she may have suffered more than 99% of children on this planet but she doesn't seem to CARE. My son can stub his toe and wail about it for an hour. She can get 2 IVs placed and whine for only 20 seconds. He can get a mild cold and act like the world is going to end. She can get pneumonia and keep smiling. The only time I've ever really seen her cry is when she's in true pain and we dope her up and knock her out. It's quite simple. Then she's back to herself in no time. Her cerebral palsy is level 5....as severe as it gets. Her lungs don't work right, her gut doesn't work right. Her basic body systems don't work right, regulating her temperature and respiration and heartrate. But does this child look like she's suffering to you?




The real question is....why don't we allow doctors to put people out of their misery when they ARE suffering? Severely disabled kids can have an excellent quality of life. When that changes, why do we have to watch them suffer for hours, days, weeks, or years before their body finally gives out? Sometimes it's quite fast....I know kids like my daughter where they went from fine to dead in an hour. One little girl took 2 WEEKS. It was awful. But all they could do was wait. And really, that applies to all humans, not just the disabled. All humans can suffer. We can't preemptively kill them just in case they suffer. My daughter suffers less than little girls that are beaten and raped by their fathers. MUCH less. But you can't always prevent the suffering. You can stop the suffering in many cases. By different means, to be sure. But who gets to decide their life must be ended "just in case" they suffer? The mother, of course...I personally wouldn't have wanted some doctor to make that decision for me.
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#3 Old 09-26-2011, 02:50 PM
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I'm strongly pro-choice and would never dream of making the decision for any other woman. Yet, I would never purposefully have a child with disabilities. For anything major, I'd have an abortion.
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#4 Old 09-26-2011, 03:47 PM
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Originally Posted by delicioso View Post

I'm strongly pro-choice and would never dream of making the decision for any other woman. Yet, I would never purposefully have a child with disabilities. For anything major, I'd have an abortion.

Yep. The decision of whether to live or die can only be made by the person affected or a parent if it's a small child. It's no one else's business.
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#5 Old 09-26-2011, 05:16 PM
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Those children will most likely have a short life full of physical suffering. While I support the mother's right to carry the pregnancy to term, I think she's selfish for doing so.

"If you are lonely when you're alone, you are in bad company."
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#6 Old 09-26-2011, 05:18 PM
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It's definitely her choice and i'm fine with it, i'm fine with everyone making their own choices, but it kind of sucks for the kids.
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#7 Old 09-26-2011, 05:55 PM
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Originally Posted by das_nut View Post

I wonder how much agony these children will suffer in their short lives.

A lifetime's worth, relatively short is it may be.

Keep on freepin' on

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#8 Old 09-26-2011, 06:05 PM
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Originally Posted by Shauna_m View Post

But does this child look like she's suffering to you?

She looks like a child who knows she is loved to me.
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#9 Old 09-26-2011, 07:02 PM
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This is where social media becomes a problem. Unless it was reported and the OP found the article, we would have never even have known about the issue.

People may argue for the sake of the children suffering that the mother should not give birth. The bottom line is, it's none of your business. If it was 1940 when nobody would have heard about it, it would have happened. Fast forward to 2011, people post it on random internet forums. None of our business.
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#10 Old 09-26-2011, 07:17 PM
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@shauna_m, Thank you for sharing your personal experience.
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#11 Old 09-26-2011, 07:19 PM
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Originally Posted by Clueless Git View Post

She looks like a child who knows she is loved to me.

While she clearly is loved and looks and sounds like a happy child, I'm not sure how you can tell someone knows anything by how they look.
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#12 Old 09-26-2011, 07:21 PM
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@shauna_m, Thank you for sharing your personal experience.

Yes, Thank you shauna_m. It's easy forget that we're dealing with real people when reading random articles on the internet and I appreciate your story.
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#13 Old 09-26-2011, 07:34 PM
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Originally Posted by KrisMTL View Post

If it was 1940 when nobody would have heard about it, it would have happened. Fast forward to 2011, people post it on random internet forums. None of our business.

If it was 1940, the babies may have already been dead by now.

If it was 1840, the mother and children would be dead
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#14 Old 09-26-2011, 08:50 PM
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Quote:
Originally Posted by Shauna_m View Post


The real question is....why don't we allow doctors to put people out of their misery when they ARE suffering? Severely disabled kids can have an excellent quality of life. When that changes, why do we have to watch them suffer for hours, days, weeks, or years before their body finally gives out? Sometimes it's quite fast....I know kids like my daughter where they went from fine to dead in an hour. One little girl took 2 WEEKS. It was awful. But all they could do was wait. And really, that applies to all humans, not just the disabled. All humans can suffer. We can't preemptively kill them just in case they suffer. My daughter suffers less than little girls that are beaten and raped by their fathers. MUCH less. But you can't always prevent the suffering. You can stop the suffering in many cases. By different means, to be sure. But who gets to decide their life must be ended "just in case" they suffer? The mother, of course...I personally wouldn't have wanted some doctor to make that decision for me.

I love this quote
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#15 Old 09-26-2011, 08:51 PM
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Quote:
Originally Posted by KrisMTL View Post

This is where social media becomes a problem. Unless it was reported and the OP found the article, we would have never even have known about the issue.

People may argue for the sake of the children suffering that the mother should not give birth. The bottom line is, it's none of your business. If it was 1940 when nobody would have heard about it, it would have happened. Fast forward to 2011, people post it on random internet forums. None of our business.

Completely agree.
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#16 Old 09-27-2011, 02:26 AM
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She has a "fiance" so who, I wonder is paying for this? Medical? The odds are pretty good given the mother's age.

I could personally accept the argument that it is non of our business, if everyone was entitled to the same health care in this country. These twins are going to cost millions. And I mean millions and so many other people can't even afford health care. Or they go in severe debt or get their wages garnished.
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#17 Old 09-27-2011, 09:00 AM
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People like this shouldn't recieive a disproportionate number of tax dollars. The babies should be kept as comfortable as possible, but I don't think expensive, life-extending treatments should be used.

As a society, we have decided that we are willing to give X to poor people for healthcare, yet we often don't spend that money fairly or wisely.
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#18 Old 09-27-2011, 09:31 AM
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Wow, didn't hear about this. The city of Marengo is in my county too!

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#19 Old 09-27-2011, 10:26 AM
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I don't think it's selfish to sustain a pregnancy that has a high probability of resulting in a tragic consequence. I think it's a private personal choice that I have no comprehension of understanding because I've never been there.
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#20 Old 09-27-2011, 10:38 AM
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I think one can know going in how they're going to handle certain situations. And I wouldn't consider my hypothetical choice to abort such a pregnancy to be unselfish. I would not want to deal with such a situation and I would have an abortion to selfishly avoid the whole thing.
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#21 Old 09-27-2011, 10:43 AM
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I don't think it's selfish to sustain a pregnancy that has a high probability of resulting in a tragic consequence. I think it's a private personal choice that I have no comprehension of understanding because I've never been there.

This.

"[-]But caging them, killing them, eating them was unthinkable. We were creatures of the same world."
-Animorphs, #18

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#22 Old 09-27-2011, 10:56 AM
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I recently heard an x mormon woman talk about how during her 7th pregnancy, she suffered a partial uterine rupture and she suffered a lot, yet because she had such a god's will be done mindset, she allowed herself to get pregnant two more times. I'd be surprised if this woman were not religious, too.
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#23 Old 09-27-2011, 12:37 PM
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People like this shouldn't recieive a disproportionate number of tax dollars. The babies should be kept as comfortable as possible, but I don't think expensive, life-extending treatments should be used.

As a society, we have decided that we are willing to give X to poor people for healthcare, yet we often don't spend that money fairly or wisely.

In America, you don't have to be poor to get medicaid. My daughter will have it no matter how much I make. Maybe one day you will be in a position where you need it and you will understand that there's nothing wrong with taking care of the weak.

And I wonder if it's "ok" to spend the money on them if they didn't know before the child was born that it would have disabilities? Because we all know you can't abort a child after it's born. Is my daughter worthy of the tax dollars? Or should I go ahead and take a pillow and end it so no one has to pay her crazy high medical bills?
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#24 Old 09-27-2011, 02:51 PM
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As a society, we have decided that we are willing to give X to poor people for healthcare, yet we often don't spend that money fairly or wisely.

Yep. If you aren't a pregnant woman or a child under 18, you are pretty much screwed. Medicaid, food stamps, etc. are mainly for those two demographics. No one else matters as much.
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#25 Old 09-27-2011, 02:52 PM
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That's true. I didn't even think about the health insurance issue!
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#26 Old 09-27-2011, 03:54 PM
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To those that says they will never have an disabled child after its born. I am going to tell you something what if you had a child and it was healthy and nothing was wrong with it when it was born? Then months later it contracted a virus , high fever and whooping cough and bells palsy at the same time and almost died at 5 months old?
Then they don't start to talk until they are close to 2 years old and half problems with eating and don't eat proper? Then speech delay because the high fever and bells palsy hurt the brain of the child then start school at the early age of 3 because they couldn't adjust to life, had speech delays , other problems and will spend most of their lives in school in learning disability classes.
What I am explaining to you is what Happened to me in my early years, I had many struggles in my life with family, friends, neighborhood kids, school kids because of my learning disability. This also lead me in my later teens too early adulthood severe depressed person because I couldn't do what the normal kids did or people were doing.
I still get depressed because everyone around me is having babies and no me because of my health issues.
So If I had of will have a chance to become pregnant, if I was told the child will be deformed or have an health issue, I will take my chances because that is my choice to choose life because , my parents choose life for me, they had fought for me to live this long and still is fighting somewhat but, its my husband's job now to help fight me to stay alive little longer.
What my story is about is that when you have a child healthy at birth you cannot tell the future of the child. That same healthy child might someday become disabled and you will have to make decisions while its alive. That shows how life is too precious to waste and hurt and live in fear about. So next time someone claims they will not be able to have a disabled child remember that some disabilities comes after the child is born.
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#27 Old 09-27-2011, 10:04 PM
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Quote:
Originally Posted by Shauna_m View Post

In America, you don't have to be poor to get medicaid. My daughter will have it no matter how much I make. Maybe one day you will be in a position where you need it and you will understand that there's nothing wrong with taking care of the weak.

And I wonder if it's "ok" to spend the money on them if they didn't know before the child was born that it would have disabilities? Because we all know you can't abort a child after it's born. Is my daughter worthy of the tax dollars? Or should I go ahead and take a pillow and end it so no one has to pay her crazy high medical bills?

I'm basically a socialist, so I have no problem paying for the weak, but do you think it's fair that we pay "crazy high medical bills" for one child, when we aren't paying for the most basic needs of many other children? Shouldn't we use our tax dollars to help the most children/people possible?
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#28 Old 09-28-2011, 05:16 AM
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I think it's really dangerous for ANYONE to decide which sick people deserve medical care and which don't.
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#29 Old 09-28-2011, 05:29 AM
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The quality of the life of another person who cannot talk will be decided by those that bears prejudice towards life itself.

"Hell exists not to punish sinners, but to ensure that nobody sins in the first place."
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#30 Old 09-28-2011, 07:53 AM
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I think it's really dangerous for ANYONE to decide which sick people deserve medical care and which don't.

It is necessary to make such decisions, as we don't have an endless supply of funds. By not making the tough decisions up front, we are causing more people to suffer and die. More could be helped with less. As it is, some people get the expensive care that they need and others don't get any care. I don't see how someone can justify giving so much to one, to the detriment of so many.
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