Controversunday: Saviour Siblings

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Interesting topic for today's Controversunday post: our opinion on the practice of deliberately conceiving a child selected via IVF to be a genetic match for an older sibling with a serious illness requiring some kind of transplant or stem cell therapy.  What are the rights and wrongs of conceiving a child for the specific purpose of saving an existing child's life?

Since My Sister's Keeper is the obvious example, I'll start by giving my reactions to the dilemmas posed in that book, as I read it.  (This will include some details of the story, but nothing that I feel would count as a spoiler for anyone who hasn't read it.)

Before I read the book, I was against the idea of conceiving a sibling for that purpose, simply because I don't feel it right to create a person solely as a means to an end.  As I read it, with the inevitable what-would-I-do-ifs running through my mind, I realised that there was an aspect I hadn't thought of; at the time, I only had one child, but I knew we would try for another when Jamie was a bit older.  What would I do if my son was diagnosed wtih such a disease before the sibling we already planned was conceived?  Would I think it right to opt for genetic selection to ensure that that baby was a match for him?

You bet I would.  How could I not desperately hope, in such a situation, that the baby born would be the right genetic match?  Apart from wanting to save my son's life, how would the crushing disappointment of having a second child who wasn't a match affect my relationship with that child?  This wasn't the situation faced by the parents in My Sister's Keeper, who – the book makes clear – had decided their family was complete before their daughter was diagnosed with leukaemia, and changed their minds to conceive their third child solely because they needed a saviour sibling; but it was a new twist on the problem.  If I were already planning another child and discovered my child needed a saviour sibling, then, yes, I do believe it would be right to do whatever I could to ensure that the child whose conception I was already planning was the right genetic match to donate.  (The one reservation I would have about this would a practical one – how awful would it be to have to face the hassle of IVF just at the time when things were already going so badly for the family, with all the practical problems, as well as emotional stress, that a child's serious illness and the resultant hospital trips bring?  How I'd deal with that, I honestly don't know.)

The article that amoment2think linked to mentioned concerns about 'designer babies', but that aspect of things does not bother me (I hadn't, in fact, even thought about it until reading that quote in the article).  I think the term 'designer babies' is one calculated to bring up a frightening equation in our mind: wanting to ensure your child has particular genetic traits = wanting a perfect child = being a rigid, unforgiving person who doesn't accept imperfection.  I think it's obvious that wanting a saviour sibling has nothing to do with wanting a perfect child, with any sort of wanting your child to be 'better' in any kind of objective, general way than a non-genetically-manipulated child.  The father in My Sister's Keeper, as it happens, addresses this point when the parents are asked about it on a television show: "We didn't ask for a baby with blue eyes, or one that would grow to be six feet tall, or one that would have an IQ of two hundred.  Sure, we asked for specific characteristics – but they're not anything anyone would ever consider to be model human traits.  They're just Kate's traits.  We don't want a superbaby; we just want to save our daughter's life."  I don't have any problem with doing what I can to maximise the chances that one of my children can, if needed, save my other child's life.

The book raised another dilemma that I hadn't thought of – the rights and wrongs of making one child donate to another, regardless of whether their genetic suitability for so doing is through IVF or a random lucky roll of the genetic dice.  Anna is required to donate to her sister multiple times in different ways during the book – blood samples for a donor lymphocyte infusion when she's five, a bone marrow donation when she's six, and a request for a kidney transplantation when she's thirteen, this being the request that leads to her putting her foot down and bringing the lawsuit that is the subject of the book.  Each of those are difficult and painful for her, and bone marrow and kidney donation do both carry some risks.  What would I do as the parent, in such a situation?  How would I balance the needs of my two children if they clashed in that way?

To some extent, I can predict what I might do.  Blood sample from a five-year-old?  Yes, I'd make her – I don't believe a five-year-old is capable of understanding that the distress of a needle, although much more immediate and concrete than the distress of the loss of a sibling, is nevertheless much more trivial and short-lived.  Kidney from a thirteen-year-old?  No – by that age, a child will still need guidance and support, but I believe they should have the final say about a decision that big.  But how do you make the decisions that fall in between those in terms of both age and what's involved?  I don't know: I'd have to figure each situation out on its merits at the time.

None of this, of course, is answering the big question: Is it right to have a child you would not otherwise have had, as the parents in the book did, purely for the purpose of saving your existing child's life?

I don't believe it is right to create a human being for the purpose of using them as a tool rather than because you want that new person in your life.  A line from the mother's thoughts in the book sums up her mistake: "I have not really considered the specifics of this child.  I have thought of this daughter only in terms of what she will be able to do for the daughter I already have."  It's immediately before her daughter's birth, when a stranger making conversation at the hair salon asks her what names she has picked out and she realises she hasn't thought of any, has not really thought of this baby as an individual in her own right.  Later in the chapter, the moments and days after she gives birth are absent any mention of the new baby, whose early days are wordlessly erased from the story, forgotten in the description of the umbilical cord she brings with her and the procedure of transplanting its stem cells into Kate.

But I've learned that wanting a child or not wanting one isn't a simple binary decision.  I know what it's like to feel comfortable with a decision to have no more children, yet still know that if things were different, if circumstances led you to having another child, you'd still be able to love that child just as wholeheartedly as the ones you already have.  I've moved from assuming that a family taking this route must be simply using the saviour sibling, to understanding more fully how a family who would not otherwise have conceived that child might nevertheless feel joyful to get a whole new little person in their lives that they wouldn't otherwise have had, a wonderful silver lining to the cloud of their tragedy. 

So I guess my question for any family considering this dilemma would be: Do you believe – honestly – that you have it in you to love this child you're considering as an individual first and as a saviour second?  Will you be able to remember, always, to do that, to keep that priority firmly in your mind?  That should be the key question.  And, thinking about it, it's not one that applies just to saviour siblings.  It's a lesson for every parent – see who your children really are and connect with that person, not with your dream of what you want them to be.

 

Edited to add: Read the posts by the other participants!

amoment2think 

RambleRamble

Our Lady of Perpetual Breadcrumbs

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3 Comments

Filed under Deep Thought

3 responses to “Controversunday: Saviour Siblings

  1. Oh my gosh this is an amazing post. I especially love your point at the end. Yes, we so need to love our children as they are.. instead of dreaming them to be something particular. Wonderful post, so glad you joined in this month!!

  2. Becca

    A very interesting post. I have skim-read my Sister’s Keeper and I (as a non-parent) really don’t think there are any easy answers. One other factor that occurred to me whiel reading is that the additional sibling is being brought into a family that already has one very sick child – i.e. a situation where families who might have wanted another child under normal circumstances now have much less time, resources and attention to give to the new child. Its my understanding that many families with a chronically ill child and one or more healthy children find it difficult to make sure the healthy children don’t feel left out or deprived through getting less attention than the ill one. I can only imagine this would be ten times worse if a healthy child knew that he/she had been concieved in order to save their sibling.

  3. This is a really eloquent post.
    This especially resonated with me, “…to understanding more fully how a family who would not otherwise have conceived that child might nevertheless feel joyful to get a whole new little person in their lives that they wouldn’t otherwise have had, a wonderful silver lining to the cloud of their tragedy.”

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