Having One Child To Save Another: The Moral Dilemma of Savior Siblings
Doctors in France on Monday announced the country’s first birth of a “savior sibling”.
A “savior sibling” refers to the creation of a genetically matched human being, in order to be the savior of a sick child in need of a donor. This requires creating human embryos via in vitro vertilization, fertilizing the mother’s egg with the father’s sperm.
Then, using pre-implantation technology, the embryos are tested, and the one deemed genetically compatible is implanted into the mother’s womb in order for the embryo to grow and develop. Once that baby is delivered, the cord blood is often collected because it provides a perfect match for the sick sibling. Later on, bone marrow, blood, or even organs, can also be taken and used for transplantation for the sick sibling.
France’s first “savior sibling” was conceived through in vitro and born to parents of Turkish origin January 26 at the Antoine Beclere Hospital in Clamart, in the suburbs of Paris. The child’s embryo was genetically selected to ensure he did not carry the gene for beta thalassemia, from which his siblings suffer, but was also a close enough match to provide treatment cells from umbilical cord blood, a rich source of stem cells.
Beta thalassemia produces an abnormal form of hemoglobin, the protein in red blood cells which carries oxygen around the body. It causes destruction of red blood cells, which in turn leads to anemia.
The world’s first “savior sibling” was Adam Nash, born in the United States in 2000. Chicago doctors helped the Nash family conceive the baby boy who provided umbilical cord blood stem cells used to treat his sister Molly who was affected by a rare genetic condition called Fanconi’s anaemia.
If not for the exact match from Adam, Molly would have died. The Nashes created 30 embryos and went through four rounds of in vitro fertilization (IVF) to finally produce Adam. The procedure involved testing IVF embryos to identify those that were disease-free and a tissue match for Molly. Of course, the ethics surrounding the destruction of the 29 other embryos is concerning. Adam was chosen, 29 other human lives were not because their DNA was not able to rescue Molly from a deadly diagnosis.
As technology moves at warp speed these moral dilemmas will only increase. For the first time in history, we are able to intentionally create human life and allow it to fully develop solely because we need that life to save another. Realistically, there could be several embryos which provide the genetic match, but since only one is needed; even embryos which make the cut are thrown away. But who’s to say why one human life is more valuable than another? In our desperate need to do whatever it takes to heal our children are we crossing an ethical line?
How do you feel about the concept of savior siblings? Are they, from the moment of birth denied the full rights to their own bodies? Even more troubling, what about those other lives created, and then destroyed because they did not perfectly meet the need. Or, as a parent, would you do anything it took to save your child’s life?
I’m not a parent. In theory, I have no problem with it. The lives not used is not an issue for me.
But I wonder about the savior sibling’s quality of life. Besides the questions of their rights to their own bodies, there’s the psychology to consider. That’s some heavy psychology to lay on a child, any child. And that’s some heavy psychology to deal with as a parent. Does that child know that he/she was “created” only to save the life of a pre-existing sibling? How does the parent feel toward the savior sibling? Does a parent look at a savior sibling differently? Does the child saved know the situation?
I mean, you’re in essence telling a child that the only reason they exist is because they have/had something that their sibling needed. They are an afterthought, a cultivated in a laboratory cure for the child really wanted. That’s fucked up.
@Jeneria – Good point. Or maybe they raise the savior child as The SAVIOR child and the sick kid feels guilty. Like, “Molly, if it wasn’t for Adam you wouldn’t be here” kind of thing? I dunno… That’s the flip side. I wonder if the health of the savior child is ever compromised at all though by having to give up certain organs? It’s not like they got to choose… they were born to be harvested.
I think it was CSI that had an episode where a savior child rebelled against donating more to the sick kid and the parents killed the savior child in order to get what they needed. I remember being fully creeped out by that.
Jeneria, I actually saw a CSI episode where the sick child killed his savior sibling because he felt terrible about the pain and suffering he put her through and wanted to end his own life and her pain.
I recommend the book My Sister’s Keeper by Jodi Picoult. Don’t bother with the movie (they messed with the ending), but the book is an excellent exploration of how this kind of sibling would seriously mess with family dynamics. If the cord blood is supposed to be enough, what happens when it isn’t and you need something else from the sibling? Where do you stop the donating? Scary can of worms to open.
I would do anything to save my childrens lives. However, I think about the life of the “savior” or “donor” child. Cheesy reference, but I have read and watched My Sister’s Keeper. Brings a whole new prospective to this topic. I think about my sweet Minnies, and if they were sick and another child could help save them, I am sure I’d do it. But, I would really try and find a way to make the donor child feel special and not that they were just a scientific test tube baby. That they were needed and loved. Also, I would hope they didn’t hate being a donor if it deemed necessary for them to continually donate. Troubling topic for me. Hope I don’t have to make this kind of a decision anytime soon.
Love your blog and your babblings Monica!! I LOVE to read about all the peeps you refer to and see if I can remember them.
XOXO
Kel
I don’t know… I’ve heard a lot of people say they had a second child because they wanted their first to have someone to play with, or to keep the first from growing up as an only child. I don’t think going into a second pregnancy at least partly for those reasons makes the parents think of the second child as some sort of hired playmate for the first child, and I don’t think using your second child’s cord blood to help your first child is going to make you think of the second child as nothing but a bunch of walking organs you can harvest for the sake of the first. I suspect this is the kind of thing that would seem really significant right when the second child was born – and then pretty soon it would fade into the background of family life. I really doubt anybody’s family is saying, “Hey, little Bobby, go wake your brother the Savior for breakfast,” or, “Bobby, of course Jimmy gets the biggest piece of cake, HE SAVED YOUR LIFE.”
@Grace, thank you. I had my procedural drama plot lines messed up!
you say that the other lives are destroyed. i take issue with calling embryos lives. i know this will probably open up a can of worms, but to me an embryo is not a ‘life’ yet.
I object to your statement that 29 embryos were destroyed to create Adam. First of all, if they did four rounds of IVF, they must have used at least 4 embryos (possibly more), leaving no more than 26 after conceiving Adam. Furthermore, embryos do not have to be destroyed after IVF. They can be stored in case the parents want to try for another child in the future, or they can be donated to other women who wish to be parents. This process would not require the destruction of any embryos, any more than typical IVF does.
@Meredith I couldn’t get a definitive number on the embryos the Nash’s ultimately created. Either way, I agree with your comparison of embryos in this case to those in typical IVF.
One source says 29 embryos were “discarded”, one says 24 embryos were created, and still another says 15 but the latter two articles don’t mention what was done with those embryos not used.
http://www.cbc-network.org/2009/07/my-sisters-savior/
http://www.hum.utah.edu/~bbenham/2510%20Spring%2009/Steinbock-savior%20sibling.pdf
http://www.ncbi.nlm.nih.gov/pubmed/12537817
This was probably before your time, but there was a “savior sibling” born, or probably about 15 years or so ago.
Older daughter was very sick, can’t remember what with, but older parents got pregnant so they could harvest something from that child.
People magazine and a few news shows covered it heavily back in the day.
And then there is the fiction treatment of something along those lines, “My Sister’s Keeper.”
I think the most important issue here is not to get wrapped up in media or “movie-wonderland” sensationalisation. “My Sister’s Keeper” is so far from reality, it is unbelievable. So many references are made to books, films and TV – when will people actually try to find out the facts. My daughter died a horrible, extremely painful death at the age of 11 and my little boy, now only 3, has the same condition that took her from us. WALK A MILE IN OUR SHOES – then feel free to comment. Has anybody actually stopped to think if parents like us want anothe child, just because we want another child and the ability to use PGD-IVF to prevent that child from the same suffering and maybe use the umbilical cord (a waste product that is tossed in the bin, under normal circumstances) to save the life of our little boy – what parent wouldn’t???
PLEASE PLEASE PLEASE form an opinion based on facts not on what you see on the big screen or on CSI.
I’m with Diera–people have second children for all kinds of reasons and giving the chance of life to another child is as good a reason as any. I would hope and expect that the circumstances of baby #2′s conception and birth would fade into the background.
I also take issue with comparing value of the life of a living child with the “lives” of embryos–at the stage these embryos are discarded (or frozen or donated) they are not even embryos–they’re zygotes–we’re talking about 2-10 cells. Saying that’s a life is virtually the same as saying that wasting an egg or sperm is discarding a life.
WOW…..when I first read the topic the embryo’s didn’t even cross my mind. All I could think about was the child that was “created” to help their sibling. I have no idea what I would do if I were in this situation. I don’t think you could honestly say what you would or wouldn’t do until like David said you “walked a mile in their shoes”. As parents we do whatever we can to protect our children and do what we believe is right for them……this is so tough. David I’m sorry for the suffering your family has endured. xxoo
Having a sick child in general really messes with a family. If you ask marriage and family therapists, a child who is seriously ill is a huge risk factor for divorce. So with or without a savior sibling, the family structure is warped.
How do you discipline a child who is dying? How do you spend time with your other children without guilt or fear when their sibling is in the hospital all the time? I knew a family whose daughter was diagnosed with a deadly form of cancer at a very young age. They went to every doctor and tried every treatment possible. This little girl wasn’t quite five when she died, and she never knew a single day of life that she wasn’t sick. You could see the horrible toll it took on her parents and siblings. Frankly, I can’t believe the parents are still married.
As a mom that’s been there let me say that you have no idea what you will do till you are in that situation. My am strongly pro-life, but you can donate the left over embryos. In my case I couldn’t afford that so I had two more children looking for a match for one of my other children. Thank God our last one was. We are now using his cord blood to save his brother.
You don’t treat the other children different, anymore than you treat any two siblings different. They may have came into this world to save another, but what is more miraculous than that?!?!
Before you judge, you really should try to put yourself in their shoes. How could you not do whatever it takes to save your child?
Wow what a sad topic. Thanks for the post and thank you to the comments too, I have no idea what I would do in that situation. I cannot imagine not doing anything and everything I could to fight for the life of any of my children, but I have also seen as a physician when people hold on too long. Holding unto life too long or holding unto life at any cost is a very human impulse, but it becomes its own form of misery and death. There is a time for everything and every season under heaven. There is a time, too, to accept death. However, that is all a fine theory, but again, if it were my child, I think I would do anything and everything as well. Very, very tough call and I would leave it and I would hope that the parents making these decisions get a lot of love and guidance.
Being a savior child might be difficult because of feeling only wanted for your body, feeling less than the sibling you were created to save, etc.
Being a child of an accidental pregnancy (about 1/2 of all pregnancies are unplanned) might be difficult because of feeling unwanted, feeling less than other siblings who were planned, etc.
Being the child of a fertility treatment assisted pregnancy might be difficult because of the pressure of how hard your parents tried to have you, etc.
My point is that EVERY circumstance might cause problems. It all depends on the parents and how well they parent their child – no matter how they got pregnant or why they got pregnant. Parents who have savior children are no less likely to love the savior child than parents who got drunk and forgot to put on a condom are to love their oops child. Let’s give all parents the benefit of the doubt, because the vast majority of parents end up loving their kids and trying to do the best for them.
I would do it in a heartbeat. And that child created would be loved and cherished because they’re MY CHILD! I highly doubt parents of that child would ever only see them as just “donors”, that’s ridiculous. They still carried, gave birth to, and took home their baby. Of course I’m sure they all hope that the child created will only be needed for little things like umbilical cord blood (which we donated instead of letting them throw that valuable stuff away!), but if one of my 4 siblings needed an organ, I would give them one of mine without hesitation!!
Thank you so much, David and Debbie, for sharing your unique perspectives on this issue! I think the far more important issue at hand, in regard to the “discarded” embryos, is that parents are not always just looking for a “savior” child, but also for a way to ensure that another child that they may desperately want won’t have to go through the same suffering as their first child. If that means that the second child’s birth can also be of benefit in treating the first child, all the much better! I’m certain it would be a difficult decision in any case, but it doesn’t seem that much different than normal IVF, where many more embryos are produced than are necessarily viable.
http://youtu.be/Ws60J5ASf_s
A MUST SEE VIDEO THANK YOU