Gammy (photo from report at The Age National)
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.
It’s a great point Keighley makes. I often talk in terms of these being wanted pregnancies for similar reasons. If there was no embedded discrimination we could both retire and mums would just get on with having great lives with their wanted children. A diagnosis wouldn’t be a drama or change the course of health care that she sought when pregnant. That’s the dream.
Mike–click the link for “burden” in the article. You’ll see a study there of mothers who terminated, 97% of which described their pregnancies as wanted. “Wanted” isn’t enough, nor is recognizing their unborn child as truly a child, since the other study at the same blog post shows mothers do consider their children to be in fact children. Instead, they are terminating because they think they are doing what’s best not only for themselves, but for their child, by sparing their child a lifetime of suffering. Hence, the need is not to convince women to want their pregnancy, but for women to have an accurate understanding of what a life with Down syndrome can be like prior to making their decision.
A Dutch paper recently interviewed a woman who terminated her pregnancy after her child was diagnosed with Down syndrome ‘out of love for her family (husband and 3-year old son)’. Many comments on the article read ‘that was such a beautiful thought’. I believe (at least part) of the women who voice reasons like ‘doing what’s best for the child or family members’ are simply justifying their decision to themselves and others. Later in the interview she said ‘I played a role in the death of my child and I have to live with that somehow’. Turning ones rol in such a decision into a ‘noble’ one is the only way for some women to be able to live with this.
Renate–please provide the link to the interview if you have it. I’m interested. Thanks.
Mark, here’s the link. Article is in Dutch language though. http://www.trouw.nl/tr/nl/4516/Gezondheid/article/detail/3770827/2014/10/17/Wie-kiest-er-voor-een-kind-met-Down.dhtml
“the need is not to convince women to want their pregnancy, but for women to have an accurate understanding of what a life with Down syndrome can be like prior to making their decision.”
100% Agree.
I think we all agree here. My point is that without a bias against Down syndrome, no choice would be required. It would be like finding out the gender so you can decide how to decorate their room before birth. When we message choice, we can unintentionally reinforce that the difference requires a choice to be made – I think we need to watch that. Promoting acceptance rather than decision making and choice. I see can see how we can get backed into a corner with our messaging.
Getting rid of a bias is difficult. In India girls are still being selectively terminated even though the government is actively discouraging that. Old ‘habits’ die hard. According human rights a woman has full ‘choice’ over heer pregnancy and that includes living a lifestyle that knowingly is harmful for the development of the baby and also (selective) abortion. Somewhere in the 9 months a fetus should start getting rights. This area of law and human rights is underdeveloped and needs to be addressed. A fetus has a right to an open, unbiased future and mom and society at large have a responsibility in achieving this.
People are more and more making the easy choice. But what is the easy choice? As a mom who has lost more than child to a miscarriage, my choice was easy. But how does this next generation look at having a child with a disability who may cause them to spend hours and hours and hours and dollars and dollars and dollars? I do not know how this new generation thinks…. And so I wonder. What is the message we send? It should be truthful.
I’m hopeful, Deanna, that through inclusion efforts, their first thought won’t be, “man, is this kid going to cost a lot of time & money” (b/c as Leticia says in her post, what kid doesn’t?). Instead, I hope their first thought is, “Down syndrome? Like what my classmate Juliet had when I was in elementary school? She was pretty cool and her mom and dad were nice.” 😉
I too hope that the young adults who went to school with my daughters will, when faced with a prenatal diagnosis, remember that they once knew someone with Down syndrome and that they were people first. I know when I had a baby prenatally diagnosed with spina bifida it was remembering the children and adults I had known with ina bifida that removed fear about the condition, though I was very concerned my baby might die. She did die at a week old but at least we gave her the chance to live. As the adoptive mother of two girls with DS I am well aware that even when one sees the initially wanted baby, there is no guarantee the parents will want to raise the child. In the Australian case the parents could have taken the baby home and then placed him for adoption. They are very lucky that the surrogate not only refused an abortion (which would have endangered the baby girl’s life, but that the surrogate has been willing to love and raise their baby boy.
I know that I share A LOT (maybe too much) when it comes to my daughter’s (with Ds) life on Facebook… but my intention has always been to show others what a great quality of life she has….”more alike than different”. This term “burden” that society refers to should include ALL CHILDREN. When we decide to bring children into our lives, we make the conscious decision that the inconvenience is a small compromise for the joy of expanding our families. Therefore, wouldn’t ALL children be considered ‘burdens’? just my thought
Ah, but then there are those who prefer to grade who are more burdensome than others, with Down syndrome almost always falling on the line of more burdensome for those who care to make those assessments.
Thanks, Mark. I had read Leticia’s post this weekend too. I appreciate your balanced approach on this issue. I remember once hearing a reporter interviewed many years ago on abortion rights in the US (I believe he had just written a book). He said that the word “Choice’ was unfortunate because in his research for his book, the overwhelming majority of women he met in abortion clinics felt they had no choice except to terminate their pregnancies, indicating, in my opinion, that as a society we are all failing women, and by extension their children, in these situations.
The women who chose to terminate a pregnancy because of a diagnosis of Down syndrome may feel they have no choice, which is why it is so important that every diagnosis is accompanied with accurate information about the what it means to have Down syndrome, particularly in this day and age. Also, it is more common for women with a prenatal diagnosis of DS to terminate when living in a region where there is little support infrastructure for people with disabilities even if that region is in the heart of a very conservative state. (http://www.politifact.com/truth-o-meter/statements/2012/feb/27/rick-santorum/rick-santorum-says-90-percent-down-syndrome-childr/)
Thanks for the link and for the perspective that for many, they feel they really didn’t have a choice other than to terminate.
Parents who hand pick their children in the quest for perfection are not families they are corporations.
Let’s put it another way, mum and dad want to have a baby. Doctor says ok would you like one with Down syndrome or one without ? What do you think most people would go for?
This isn’t how it works. The parents are pregnant with a child that has Down syndrome. The question is do you want to continue this pregnancy or terminate it? That is different than a choice when there is not a life already in existence.
In principle I agree with Mark. However, living in North-Western Europe ,which is mostly secular, selective abortion is promoted and regarded as a preventative measure. It doesn’t help that the UN has decided that human rights only start after birth. As a mother of two children with Down syndrome I have written many opinions in Dutch newspapers about prenatal screening for Down, and often I get reactions that I am against ‘free choice’ and how I have saddled up the community with a (financial) burden. Talk about social pressure! Research that shows that selective abortion can damage women psychologically is ignored in the whole counselling proces too. Unfortunately, this leading to the almost extinction of Down syndrome in Denmark. I fear many European countries will follow.