A recent news story presents the question all expectant mothers receiving a prenatal test result for Down syndrome will have to answer for themselves: which is the harder choice, continuing the pregnancy or terminating it?
Thai surrogate left with abandoned twin with Down syndrome
The recent news story comes from the other side of the globe from me. A surrogate mother in Thailand carried twins for an Australian couple. However, when the babies were born and one had Down syndrome, the Aussies only claimed the other twin. The couple left Gammy, the twin with Down syndrome, in the surrogate’s custody.
Upon reading the headline, my mind instantly flashed to two other news reports several years old now.
Canadian surrogate pressured to abort for Down syndrome
In 2010, a Canadian surrogate mother received a prenatal test result suggesting the child she was carrying had Down syndrome. The parents pressured the surrogate to abort the pregnancy, but she initially refused. Only upon learning that the parents could withdraw their parental rights and leave the child with the surrogate did she ultimately go through with an abortion, not having the financial means to care for the child on her own.
Italian mom aborts twin without Down syndrome
In 2007, in Italy, a mother found out that one of the twins she was carrying had Down syndrome. She went in to abort that child, but the twin without Down syndrome was aborted. She went back, then, to abort the remaining twin, the one that did have Down syndrome.
These headlines leave me shaking my head at the pathos of the entire situation.
But, then, Dr. Brian Skotko sent me this article from earlier this year.
Surrogate offered $10,000 to abort pregnancy
A surrogate mother, with no other means of income, and children of her own to care for, agreed to carry a child for parents who also already had children, but wanted another. In the middle of the pregnancy, ultrasound revealed structural anomalies affecting the child’s brain, heart, internal organs, as well as showing a cleft lip. The parents urged the mother to abort the pregnancy, engaged legal counsel to make this happen, and offered her $10,000 to have the abortion. Instead, the surrogate mother fled to Michigan, where state law gave her parental rights primacy over the other parents. Baby S., as she is referred to in the report, was born with significant structural anomalies: a brain with undivided hemispheres which will significantly impact cognitive and physical development; a heart requiring surgery; and internal organs out of their proper position requiring more surgery. (I encourage you to read the whole, compelling account).
Differing views on beneficence
Each story puts into contrast the differing views over how to be guided by the ethical principle of beneficence–done for the benefit of others–in dealing with difficult health situations.
The parents of Baby S. thought it more caring, less hurtful, for her to be aborted, thereby sparing Baby S. the series of surgeries she will undergo, all with the outcome still being a severely debilitated way of living. The surrogate mother, instead, thought it more caring, and less hurtful, to give Baby S. a chance at life. The same tension exists in the Canadian and Italian story, where ultimately the children with Down syndrome were aborted.
Many who read this blog, particularly those being parents of children with Down syndrome, will want to distinguish the case of Baby S. from the children aborted because they had Down syndrome. The distinction, they will say, is that unlike Baby S., whose prognosis is more predictable due to the significant structural anomalies, Down syndrome has a range of developmental delay which is unknowable prenatally or even at the time of birth. But, what those who wish to make that distinction may not appreciate is that for those women who do terminate, they do so citing the expected “burden” of Down syndrome on their child and their compassionate desire to spare their child that burden.
A blog post about the Thai surrogacy case, however, challenges this analysis, and I think it worth reflecting on.
What is the harder choice?
Leticia Keighley, who blogs at Embracing Wade, (and was featured previously in this post) takes a different perspective on which is the beneficent decision when faced with a prenatal diagnosis of a disability:
I was so heartbroken by this story. Parents of children with a disability are sometimes asked “How do you do it?..” And my answer has always been “Because not doing it is harder.” I used to say that because I believed that once parents met their baby and understood the reality of raising their child they would see that parenting is just parenting. There are alwayschallenges and there is always joy and they come in different measures at different times and it’s the same for everyone. I used to say it because it was a way for other parents to understand that when your child needs something you just do what needs to be done for them whether it’s a tissue for a runny nose or a heart operation. You just do it because you’re a parent and you don’t get to choose which aspects of parenting you are going to do and which ones you aren’t. You do it because the child is a child and not loving them, not being there for them and not embracing them fully into your life is harder.
I do not recall seeing that perspective shared elsewhere. I took as a given that most people would view terminating a pregnancy following a prenatal diagnosis of Down syndrome as still a hard choice, but not as hard as raising a child with Down syndrome. No doubt, that is the analysis done by parents who do choose to terminate. But, I think Keighley makes a very good point: that choosing to not be there for your child is actually the harder choice.
I have a very close family member who actively follows the work I and others are doing in trying to improve the way prenatal testing is administered such that women receive all the information they are supposed to receive before making their decision. While this family member is incredibly supportive, my relative doesn’t believe women will choose to continue even if given all the information. His reasoning is perhaps pessimistic, but also perhaps realistic:
You are asking women to choose to make the hard choice. More and more, people are choosing not to make the hard choice.
Keighley’s perspective, however, could change that analysis, if more parents appreciate that choosing not to be there for your child is the harder choice.