Edits in red to reflect updated information.
For the last week the tale of baby Leo Forrest has been popping up in my social media feeds. Basically, an Armenian woman and a man from New Zealand who was living in Armenia got married, got pregnant, and when the baby was born it was discovered that he had Down Syndrome. The father says that the mother and her family wished to send the child to an orphanage (as is not uncommon in Armenia or many other places in the world). The father refused and decided that he wants to take the baby to his home country of New Zealand. The father started a crowdfunding site – asking for AUS$60k to get the baby to New Zealand and so the father wouldn’t have to work in the first year (although there was no sense of how this amount was determined) – the campaign wasn’t doing very well until yesterday when ABC News posted a story and now it is up to over AUS$500k. Incredible. The baby’s mother says that in the immediate emotional aftermath of the birth, she was asked if she wanted to keep the baby or not by the hospital and that it was decided by her that her husband would take the baby to New Zealand for a better life. She makes $180/month. Her husband was/is unemployed. She says that the father took the baby from the hospital and implied that it was without her permission. She seems to have decided that the baby will have a better life in New Zealand and that that is more important than her reputation. She says: “As a mother who has faced this severe situation, being in the hospital under stress and depression, experiencing enormous pressure from every side, not finding any support from my husband’s part on any possibilities of giving a child decent life in Armenia, I faced two options: to take care of the child on my own in Armenia, or to abandon my maternal instincts and extend the baby an opportunity to enjoy a decent life with his father in New Zealand. I went for the second option.”
I have seen many people – Americans mostly – write before the mother’s side of the story came out about how this dad is a hero and how the mom is a horrible person. And while I absolutely agree that people with Down Syndrome should have all the opportunities in the world and I personally cannot imagine giving up my child, I also wish that these angry Internet commentors had some context. As someone who has spent a lot of time in Armenia and the region as well as someone who went through a pregnancy in Armenia, I hope that I can help contextualize.
First, it is true that it is not uncommon for babies with DS and other disabilities to be given to an orphanage – in Armenia and in many many countries of the world.
Second, it is also true that many women never make it to the point of giving a child up because they opt to terminate the pregnancy upon learning of a DS diagnosis. In fact, according to this article and Wikipedia, 92% of women who receive a pre-natal diagnosis of DS terminate the pregnancy – although this ranges by country. My pre-natal nurse friend told me that ultrasounds can detect DS markers and that blood tests, standard in America, at different stages can also determine a risk for DS. There are more sophisticated tests as well but are not standard in America or elsewhere. In my own pregnancy in Armenia, I had all those standard tests, but it may have been because I asked for them. I don’t know why this mother either did not have pre-natal screens or if she knew this information and chose not to terminate the pregnancy and rather deliver the baby. I have heard that she did have the sonogram and the DS markers did not show and that she did not have additional blood tests done, but I don’t have any concrete information. ETA: 10am Pacific, the mother reports that the sonogram was normal.
Third, I ask you to take into consideration that you probably have little idea of the cultural environment that this woman is living in and what kind of life this baby would have in Armenia. Life is hard in Armenia. There is great economic and political instability. Moreover, the lack of infrastructure and services for this child are tremendous. Having spent some time at orphanages for disabled children, I can say that those facilities – with trained staff and equipment – are probably “better” for these children in terms of opportunities than living at home and not having any sort of outpatient facilities (like a special school) available to them. Although some would disagree with me – there is no lack of criticism of the Armenian orphanage system. Additionally, there is social stigma attached to disability and a family would also have to deal with that. I’m not saying that this is an excuse, but it is the reality. Also because of the lack of infrastructure and services, I can imagine that a family would also have to consider what will happen to this child in his or her adulthood. If an adult with DS needs additional caregiving, will there be someone available to do it?
To be clear, I don’t like that this woman was willing to give up her child. Again, I want people with DS to have all the opportunities in the world. But I am certain that this child would not have as many opportunities in Armenia as he will in New Zealand. Finally, I also hope that people reading this story realize that it is infinitely more complicated and has many more sides than any of us know. So let us all hope for the best for all parties involved.
ETA: Salon did an interesting story on this as well.
ETA: Here’s a nice article written by the mother of a child with DS on this issue.
ETA: Media.am had a great article about the media reaction to this story.