Friday, May 21, 2010
Savior Siblings, Creating a Life to Save Another
10:01 PM
What if your child had a potentially fatal disease, and the only hope of saving them was to have another child?
"A saviour sibling is a child selected as a result of genetic screening to have some innate characteristic that will help save the life of an existing brother or sister.
The term first appeared in the Journal of Medical Ethics in October 2002 but began to be widely used in the press the following year following the birth of Jamie Whitaker. He had been screened as an embryo by preimplantation genetic diagnosis to provide a genetic match for his brother Charlie, who was suffering from the fatal blood disorder Diamond-Blackfan anaemia (named after Louis Diamond and Kenneth Blackfan of Harvard University, who described the disorder in 1938). It was hoped that stem cells from Jamie’s umbilical cord would cure the condition. Jamie was found to be a perfect match and the treatment was successful.
The case raised deep ethical issues about whether it was ever right to create one life in order to save another. It also contributed to concerns over the creation of what are pejoratively called designer babies, though the latter is a broad term for children created to any sort of parental specification; saviour siblings are specifically created to help an existing child. Concerns have also been voiced about the potential adverse psychological effects on a child born not for itself but to save another."
A simple google search for "Savior Siblings" can keep one busy for quite a while. Like this story (here) about a little girl named Hailey suffering from leukemia and her parents' hopes to save her by having another child.
So many questions are raised by diving into this issue.
What would you do? And where's the line? Would it be okay if you were just using your baby's cord blood? What if your child needed a kidney or bone marrow, something that would be invasive to procure? How would your new child feel if they "failed" to save their older sibling? And for that matter, how would they feel if they succeeded? Might the outcome impact how the parents feel about the "Savior Sibling", at least on a subconscious level? We tend to say we'd do anything to save our children, so do the ends justify the means?
I look forward to hearing what others of you think and wonder about this, so discuss :-)
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UPDATE10 years ago
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14 comments:
This is a great topic for discussion and reminds me of the book 'My sister's keeper' by Jodi Picoult. I think creating a child to save another is okay if the procedures do not go farther than taking the cord blood. I think it would be a human rights violation to take organs or other body parts of that child without their consent whether or not it was to save another life. Putting myself in the shoes of the saviour baby, I would want to save my sibling because it was MY choice and not because I was forced into it or had parts of me taken away without having a say in the matter.
This also brings up the question though, how old would and should the child have to be to give consent to donate organs, bone marrow, blood, etc (if they wanted to)? Since afterall, I'm sure there would be a deadline (no pun intended) with the sick sibling.
I cannot imagine being in that moms place, and hope I never have to be. I just briefly discussed this with my husband, and we both agreed that we would have another baby if they needed the cord blood to match our daughter's blood type.
That is most likely where we would draw the line. Nothing more than that. But I don't really know since I am not in that situation & it's hard to say unless you are living with a sick child & want them to be cured.
I think that it really depends on whether the parents were going to have another child anyhow. If the plans for child 2, 3, etc. were already in the works, then I see absolutely no problem with this (though at some point, I'm sure the child would have to consent to procedures, which is kind of tricky). Sad situation to be in, that's for sure, and I try to not judge any parent in that situation, because I know that I wouldn't know what to do either if it were me.
I see it as an incidental factor, b/c I would love to have a big family and would welcome children whether they had that matched gene or not.
Honestly my gut reaction to it is there's something "off" about genetic screening etc and having a child ONLY to save the life of a child I already have (like if I knew I did not want more children but then this situation came up and I decided to have another). BUT... I think no one can judge until they are in this situation. I can't imagine how horrible it must be to have to make a choice like this and although, like I said, there's something offputting about it to me, I think I would probably do it if it was the only option to have a chance at saving my son's life.
Cord blood? Sure. I would love to have another child anyways.
But I don't think I would bring another child into the world and expect anything more invasive than cord blood to be given to a sibling. And I don't think a child old enough to understand the situation should be put in a place to make that kind of decision.
*However,* I have never been and pray to God that I never will be in a situation where one of my children is sick like that. I completely agree with Tasha, I don't know how my outlook would change if I were in that situation.
I am a momma to one beautiful intelligent little girl. There is no way I could ever love her anymore or less and I would have another baby to save her life. I can say this because no matter how it turned out I would love the other child with all my heart no matter what. If I could create in my womb not only another beautiful baby but one that could help it's sibling I would. I would not view it as having the baby just to save a life but creating a life that could help another life. I am sure that I can say only what I know to be true to my heart and soul. I can not imagine the situation or hard it would be to be the mom. I can not pretend to know exactly how I would feel. I do know that my heart would love the new child no matter the outcome.
I'm the mom of 5, one of my sons went through cancer treatment in his teens. Prior to that experience, I might have said the same thing most moms would say about sacrifice for your children. You don't know until it happens to you. But, something about the moment that comes, when you watch your baby breathe slower and slower, lose weight by the hour, succumb to bacteria....a mother knows when the possibilities are limited to desire for survival. It's not as if losing a child happens because someone gave up....it's more like keeping your child's life on earth requires the kind of sacrifice you never could imagine. I am certain, had I asked, any one of us who loved our Nick would have obliged. Through my son's treatment, I nursed a babe in arms. It was her spirit, not her body that came to our family. We didn't have to go to the extreme, but we would have. In a heartbeat.
Why does everybody seem to think that taking cord blood is not the same as taking blood or anything else? The cord is the lifeline for the baby after birth. It continues to provide oxygen to the newborn as it's learning to breathe. Many many babies go into distress as soon as the cord is clamped. There's been many studies on the devastating effects of early cord clamping. There's even a facebook group for "leaving the cord intact until it stops pulsating" by then then there's no cord blood to collect. The cord blood still belongs to the baby you're taking it from. I wonder if the child with the disease might have been better off if he had received his own cord blood at the time of his birth (somehow I think he didn't)
Don't get me wrong, I'm not judging somebody else for using cord blood, bone marrow, or organs for another child. But I'm not sure where anybody gets the idea that one is worse then the other. Clamping too early can cause the infant to die. It's rare, but it is a risk and can be just as traumatic, as any of the other procedures.
Umbilical blood is one thing but more than that is just not right.
I can't stand the medical establishment, they insist the only thing for illnesses are their drugs. There is preventive care and natural cures in life. God has given us all the medicines we need in nature, however there is a point where we die and nothing can be done. Sacrificing another PERSON is horrible and is inexcusable. While as a mother I can fully understand the pain and anguish of watching your child in pain, I hate it when my little ones get colds. However, if you bring another child into this world, THEY are your baby too and deserve the same love and protection. On that note it probably is not appropriate to bring another person into this world if at the moment you are too wrapped up in the care of the first one.
This is a hard issue to discuss... because how can you rank one child over another?
Cord blood is a NECESSITY for newborns. Do some research - it isn't just something to siphon off and save for later. Not allowing a newborn to have their cord blood is like taking a huge amount of YOUR blood out of your body. It's dangerous and it's cruel.
And taking the child's bone marrow or organs? I don't know. I love my son dearly, and I'd willingly give of myself to save him... but I don't OWN him or any future children; they are human beings in their own right. Therefore, I don't think I could do it. I couldn't have a child to save a child, because I think nothing should be forced on another human being without their consent.
- E
is it not the same as having a baby to save a marriage, or to not be lonely, or so your child will have a sibling? I think as long as you WANT the child too, then its not a problem. Nobody should have a child if they dont want one, but if you get a child, you should provide for him/her.
We are leaning toward being "done" with our two children, but if one of them needed cord blood, then yes, we'd absolutely consider having a third if it could possibly save our existing child's life.
Yes, we are aware of how much a baby needs cord blood. Neither of our children got as much as they could have had. Our daughter's cord was clamped and the blood donated. Our son was born floppy, white and unresponsive, and the midwife had to clamp and cut the cord much sooner than she would have liked because she needed a flat surface to lay him down on to work on him and get him breathing on his own.
My dad was diagnosed with cancer the same time I got pregnant with our daughter. We talked to his doctors at MD Anderson Cancer Center about giving him our daughter's cord blood, if a transfusion would help his type of cancer. Unfortunately it would not, and they strongly encouraged us to donate it instead. Clamping the cord did not result in any problems for our daughter, and we hope that the cells were put to good use for someone who truly needed them.
For us, we'd view a "savior sibling" as a very loved and wanted child, regardless of the outcome for our other children.
I can understand the purpose of a savior sibling. I dont understand the ethics or morality of it. It is extremely important to put yourself in the saviors shoes. Or booties I suppose. The medical trauma they will go through after having numerous painful medical procedures performed, as well as the emotional trauma on both the saved and saviors side. In a case where the sibling was saved, the sibling may constantly feel in debt to the younger sibling. In case of failure to save, the savior sibling would feel horrible, worthless, etc. Considering they had failed to do the act in which they were baught onto the earth for. Also the parents. How would the parents feel if the savior sibling failed? would they blame the child?
I really think that the 'savior sibling' is on its way to being something incredible. I just dont think it is there quite yet.
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