Some context to the Armenia Down Syndrome baby story – UPDATED
Edits in red to reflect updated information.
ETA: Update 11:47pm Pacific 6 Feb: Baby Leo’s mother has come forward to tell her side of the story in an Armenian and English language Facebook post. She claims that her ex is not telling the truth.
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.
Thanks for being so mindful and wise. It is so easy to judge and not so easy to stay informed and objective…especially when it comes to children with special needs.
Thank you for sharing this! A very important piece!
Context is important. Thank you, Katy. We should remember that the social isolation, stigma and discrimination that make this particular case so heart-wrenching are caused by women and men alike, and are deeper than just one case. So much still needs to change here in Armenia AND elsewhere.
Thank you for your insight and context on this issue. baby Leo case is also important because it shows to Armenian society that it is possible to love a baby with DS. Hopefully such cases will slowly change the attitude of people toward mental and physical handicaps …..but we have a long way to go like in so many countries where there is still stigma and there are so much media awareness and many organisations and that can help – as you mentioned Katy.
What about the love and support from their family? This, they would certainly not receive in an orphanage. In an institution. People need to be more educated about Down’s Syndrome. It’s 2015 for Gods sake. Infrastructure and services can’t take the place of a mother’s love.
One thing that has me confused is why the only options were, raise the boy in Armenia with all the financial, social, and emotional difficulties that would entail, or divorce, and have the father and son go to New Zealand, where there is, I guess, a more tolerant, and supportive attitude toward children with special needs, without the mother. Why could the whole family not move to New Zealand? More to the point why did the mother not seem to consider this as a viable third option? I read the article that said the mother gave the father an ultimatum, and the Facebook post the mother wrote defending herself and saying that the father did not even try to find a solution with her, and an article defending the mother based on cultural differences, which I can understand because I firmly believe that no matter how much you think you know about any situation there is always something that you will have missed or can not understand because it is not happening to you. But all that I’ve read, including the mother’s post, seems to indicate that she only ever considered the two options and I haven’t found anything to tell me why she didn’t consider the third option of going with her husband and son. Does anyone know the reasons?
I’m still confused. The way it sounds, the mother was told the baby had Downs, asked if she wanted to keep the baby without the opportunity to discuss it with her husband? Usually a married couple would be told of a child’s health condition at birth TOGETHER. And they would BOTH decide, as a couple and as the baby’s parents, what would be best for the child. This sounds like they were told separately and each made a different decision on their own. That is just weird. I am withholding judgment of either parent until I feel like I fully understand the story. What I’m glad of is that the baby is apparently going to at least have one parent and is going to a country that will accept him. I guess.
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In Armenia, fathers are not usually present at the birth.
I kind of figured that, but how these decisions were made…one at a time…without the parents whom are married, having any time to talk with one another and make such a huge decision together. It doesn’t make any sense to me. This is how a child’s life is determined in Armenia? Ask the mom, all alone after enduring childbirth alone, don’t let her discuss it with her husband and she says no I don’t this baby. THEN they go to the father and say, hey your child has Downs and your wife doesn’t want the baby. Do you want him? Is that right??? And if dad had said he doesn’t want the baby either then were does these children go? An orphanage. Yes, I know. But is that where they spend the rest of their lives? And how are they treated?
This is a sad article. As a mom to one of these special kids, I can’t help but feel dismayed at several lines of thought here. There seems to be the idea that if the mother had chosen to abort this child before birth because of DS, it was/is totally acceptable and that maybe the mother should have made sure to have medical care that indicated the problem before birth so that she could have taken care of it. Abandonment before birth or after birth of these sweet ones is horrible. In essence, it is the same tragedy. Secondly, just because a society conditions us to make decisions a certain way, does not mean we have to take those steps. Hitler conditioned those in his society to accept conditions, but many chose to follow the dictates of their conscience, not the demands of his society and they are forever remembered for their brave acts. This mom could have chosen to leave Armenia first– to go with her husband, back to New Zealand , rather than decide to let them both go alone….
Those are some facts that are immutable here:
She told the doctors that she did not want to raise the child.
She filed for divorce.
Never did she say that she WANTED to accompany her husband to New Zealand.
What happened other than those facts is open to interpretation…. my interpretation is that she is unhappy with global reaction to her decision and wants to paint herself in a better light. Her statement did little to help her cause.
Oh great, since you were there can you please fill us in on what happened during her conversation with the doctor? Thanks!
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Thank you Katy. Why contextualization is important? Not everything is black and white. Just to bring an example. In Armenia, people with elderly parents almost always look after them at home rather than sending them to care centers. To Armenians, it is cruel and ungrateful to give up on your aging parents. One can argue that in the West the quality of the care in the retirement communities is very high. However, the research shows that the aging parents are usually happier when they live with their other family members than in those centers.
Not trying to side with one or another, just trying to show why it is important to look at the situation from different angles.
Thanks for the context, when i find news like this in the media, i try to find more info to make my own point of view and no the media point of view.