Spare Parts Children?

[Eeyores Butterfly]

I recently watched My Sister's Keeper (which is also my favorite Jodi Picoult book.) One thing about her books is they always make you think.

For those who haven't read it, the premise is that a couple has a daughter with a very nasty form of Leukemia. Her best chance is a related donor but none in the family is a match. The family decides to have another child but does not have time to keep trying if the child is not an allogenic match. So the parents turn to in vitro fertlization and have genetic testing done to ensure the child is a perfect allogenic match for their sick daughter.

At first they use the stem cells from the cord blood. Later on Anna must give blood, granulocytes, and leukocytes to her sister Kate. When she is a little older she donates her bone marrow to her sister. Now Kate is in renal failure and the family wants Anna to donate a kidney. Anna files a lawsuite seeking medical emancipation from her parents.

The book raises interesting questions. At what point did the parents cross the line in what they expected of Anna? Was it right of them to ask for multiple blood donations, bone marrow, etc? Was a kidney too far? How far do you go to save the life of your child if it is being done at the expense of another child? Would you feel differently if they were already pregnant with Anna when Kate was diagnosed and she just happened to be an allogenic match as opposed to being artificially conceived for that purpose?

 

[Stacerita]

That's a hard call. I would want to do everything to protect my child. But that raises the question, which child are you protecting?

There was a true story of that very thing some years back. I believe the family was the Ayala family. The child was Anissa I believe. She was able to donate marrow and save her older sister. The sister went on to marry and live a great life. The donor child appeared to be well adjusted and happy.

 

[PrincessSuzanne]

Wow, it really does give you alot to think about. I will definitely have to see the movie now, it is based on a true story?

Remember the story of Anissa Ayala and her parents who had a baby Marissa to save her sister. You might be too young to remember that. It probably happens everyday.

Here is an article about them from last year, both are doing quite well.

http://www.ocregister.com/articles/marissa-anissa-ayala-2100465-marrow-story

Suzanne

 

[Eeyores Butterfly]

I don't believe it is based on a true story, although apparently there have been similar situations. It's very interesting. In the book, at one point it talks about how Anna wants to go to Hockey Camp but she can't go to camp because Kate might get sick and then they would need Anna. You know the mom would give Kate anything from her body in a heartbeat if that is what it took, but she can't so the burden falls to Anna.

It's interesting because you do hear of siblings donating marrow, kidneys, etc. But what happens in cases like this where the disease is one that tends to recur? At what point is it inappropriate to ask a child to make these kinds of decisions?

 

[PrincessSuzanne]

I don't believe it is based on a true story, although apparently there have been similar situations. It's very interesting. In the book, at one point it talks about how Anna wants to go to Hockey Camp but she can't go to camp because Kate might get sick and then they would need Anna. You know the mom would give Kate anything from her body in a heartbeat if that is what it took, but she can't so the burden falls to Anna.

It's interesting because you do hear of siblings donating marrow, kidneys, etc. But what happens in cases like this where the disease is one that tends to recur? At what point is it inappropriate to ask a child to make these kinds of decisions?

There does come a point where you go to far, I believe. How do think that child feels knowing they are just "spare parts"? That could be very demeaning for that child and really bad for the self esteem. I couldn't imagine doing that.

Suzanne

 

[Buckalew11]

Too deep for me. I think I'd enjoy the book, and probably the movie but I can't grasp it enough to say how I feel about it. I think the parents are desparate to help the older, sick child and while I understand that, I feel for the younger, healthy child. I think it is a place I hope to never get familiar with.

 

[Pea-n-Me]

The Ayala story

The baby born to save her sister says she has no regrets

 

[Cool-Beans]

If they are good parents, I don't need a justification for the conception. Plenty of children are conceived because their parents were drunk or just got carried away.

Not every child born was a well thought out, planned child. Not every mother could pass the, "Was your child's conception good enough for the DISers?" test.

If people decide to have a second child in order to save the life of the first, that seems as good a reason as, "I like babies and want another one" or "I want this child to have family after we die" or anything else.

None of my beezwax why people have their kids, anyway, I guess.

 

[ZephyrHawk]

Growing up I knew a family where the young daughter had leukemia. Her brother, who was 2 years older than her, did at least 2 bone marrow transplants for her, if I recall correctly. Tragically, his sister died when she was 9 or so. However, I remember that his family left the choice up to him whether to donate. He couldn't have been more than 11, but they felt it was his choice, not theirs. I think that's the issue. Not whether its okay to have kids to try and save an existing child, but whether you make it the donor child's choice. Whether or not you say, "Your life and needs and feelings are just as important to us as your sibling's."

 

[Cool-Beans]

Growing up I knew a family where the young daughter had leukemia. Her brother, who was 2 years older than her, did at least 2 bone marrow transplants for her, if I recall correctly. Tragically, his sister died when she was 9 or so. However, I remember that his family left the choice up to him whether to donate. He couldn't have been more than 11, but they felt it was his choice, not theirs. I think that's the issue. Not whether its okay to have kids to try and save an existing child, but whether you make it the donor child's choice. Whether or not you say, "Your life and needs and feelings are just as important to us as your sibling's."

And I wouldn't.

My kids were forced to share when they didn't like it. They were not allowed to beat each other up because they felt like it. I'm in charge. They will do what I consider to be right whether they like it or not. And I don't much care about their needs or feelings when it comes down to that.

No way in hell I'd let one kid die because the other didn't feel like giving him some damn marrow. He'd be told WHY we help each other live if he was too damn stupid to understand it. But if he still didn't feel like helping to save his brother's life, that'd be too damn bad.

Like having to share, it is the right thing to do, so he'd be doing it. I'd even consider saving a life to be about one trillion times more important than sharing a ball.

I would pray that had they been in that position, they would have wanted to help their sibling.

I totally understand other people feeling differently and allowing one sibling to say, "No. It'll hurt. I'm sorry, but you'll have to get help somewhere else or die. I'm not helping you." And I support a parent's right to allow that.

But there are at least two schools of thought on that issue.

 

[MrsPete]

The book raises interesting questions. At what point did the parents cross the line in what they expected of Anna? Was it right of them to ask for multiple blood donations, bone marrow, etc? Was a kidney too far? How far do you go to save the life of your child if it is being done at the expense of another child?

I found the situation to be very complicated, and I kept asking myself, "Would I have done the same thing?" I don't know -- I guess you can't know unless you're actually in those horrific situations.

Originally the parents thought they were going to have a third child (and lots of genetic tests beforehand to be SURE that this embryo would be a match for her sister) and that they'd ONLY need the new infant's cord blood to save her sister. They thought it was going to be a one-time procedure. I definitely would've done that.

Then as the book goes on, they continue to take a little more and a little more from the younger sister -- for the benefit of the older sister. BUT every time the parents thought, "This is it, and then our older daugher'll be well. This is the last time we'll have to do this to our younger daughter." While we might stop and say, "Hey, we're going to put this new baby through eight surgeries, is that really right?", I think every one of us would've said, "YES", to the idea of ONE surgery that would SAVE the older child's life . . . and that's what this family did -- they agreed to one surgery . . . then one more . . . then one more. Like I said, complicated.

I haven't seen the movie yet, but one of the great strengths of the book is that it tells the story from MULTIPLE POINTS OF VIEW, so you see why the mom makes certain decisions, how the older sister feels about "taking" from Anna, how Dad feels about moving out with Anna, and how Anna feels about it all. I look forward to seeing the movie; I don't know how they could duplicate that multiple persepctive thing on screen.

I found the end of the book to be overly "contrived". It was an overly simple and very disappointing end to a good book.

Would you feel differently if they were already pregnant with Anna when Kate was diagnosed and she just happened to be an allogenic match as opposed to being artificially conceived for that purpose?

No, I wouldn't have felt any differently about that. It's not HOW the child arrived in the world so much as what the family did to her.

 

[Eeyores Butterfly]

I honestly don't know how I feel. It's easy to sit here and think they went way too far, but how do you have perspective in that type of situation? If it were my daughter's life at stake and one of the siblings was a match, would I do anything differently? I don't know. On the one hand, when you add up all they have asked the younger daughter to do, it seems pretty appalling. On the other, when you look at each incident in isolation they seem rather innocuous.

 

[HunnyPots]

I haven't seen the movie or read the book, but my question is, what happens when younger child does everything possible for older child but older child dies anyway? What effect would that have on the psyche of the younger child? How would it affect the relationship between the parents and that younger child?

Just by watching the movie trailers, I had no idea about the younger one's ulitmate stance on the issue. I just thought it was some sappy movie about a loving family doing all they could for their child with cancer.

 

[Eeyores Butterfly]

It probably really depends on the child. I'm sure some children will feel like they did everything they could and feel good about the additional time their actions bought their siblings. Other kids may feel a more intense survivors' guilt.

One thing that was explored in the book but not the movie was the effect on the older sibling, Jesse who was not an allogenic match and how his inability to save his sister shaped his personality.

 

[Cool-Beans]

I haven't seen the movie or read the book, but my question is, what happens when younger child does everything possible for older child but older child dies anyway? What effect would that have on the psyche of the younger child? How would it affect the relationship between the parents and that younger child?

Just by watching the movie trailers, I had no idea about the younger one's ulitmate stance on the issue. I just thought it was some sappy movie about a loving family doing all they could for their child with cancer.

Different people feel different ways, so no real way to know how this person or that would feel.

I'd feel a lot worse if someone I loved died and there was a chance I could have helped, but didn't.

If I did everything I could and they died anyway, at least I wouldn't have the shame of knowing I might have helped, but chose not to try.

Again, different people feel different ways...but I couldn't live with myself if I knew I didn't do what I could.

I'd want my kids to live their lives - in fact, I want my kids to do this all the time - knowing that they did the best they could to help. If you do what you can to help other people, you can sleep easy.

If you try to help people and they die anyway, that's just how it goes. We do whatever we can to help and we know we fought the good fight.

But if they die and there is a chance that the death came about because we chose not to help...you know, the more I think about this, the more I have trouble seeing the other side.

Who sits around thinking about themselves instead of helping when the life of someone they love is at stake? And who could live with the knowledge that they might have saved that person, but chose not to bother?

 

[kaytieeldr]

Bluntly, a kidney/organ is going too far. Blood regenerates; bone marrow regenerates. Organs don't.

 

[Disneyadore]

I think no one can answer such a question.

How knows what you will do if you ever came in the horrible position that you had to take such a decision?

 

[Ohiodislover]

I think no one can answer such a question.

How knows what you will do if you ever came in the horrible position that you had to take such a decision?

Exactly, and God willing, none of us will have to find out

 

[eliza61]

No matter what, that has got to be a horrible situation to be in. I'd like to think that I would respect the 2nd daughters wishes if she said she did not want to donate a kidney. How horrible it must be to feel the only reason you were born was to give "spare parts" to some one else. Heck, I've seen families fall apart when one kid is, for what ever reason the "special' child and the other kids are just there.

On the other hand, I'd probably be campaigning like a mad women to save the "ill" kid. I hope my faith would some how kick it and give me the strenght I needed to accept the things I cannot change. "That which does not kill us makes us stronger"

 

[Cool-Beans]

Bluntly, a kidney/organ is going too far. Blood regenerates; bone marrow regenerates. Organs don't.

Neither do brothers, though.