When I started this blog a few months ago, there were certain topics that I swore I would never write about. In fact, I can think of a hundred other things that I would rather talk about right now; unfortunately those topics aren't jumping around in my head looking for attention.
There has been a lot of buzz in the DS community lately. It started with an article in the NY Times Magazine about Dr. Alberto Costa and his search for a drug that would help increase the mental functioning of those with Down Syndrome. There have been some advances in prenatal screening published in the meantime. Then this story hit: Plans to make Denmark a Down syndrome free perfect society. That prompted Margaret Somerville, the founding director of the Centre for Medicine, Ethics and Law at McGill University to write this article for the Globe and Mail. Based on her article (the only one I read initially), it sounded like the Danes had taken a page out of the Nazi Eugenics Handbook. The article alleges that prenatal screening in Denmark is used for the sole purpose of wiping people with Down syndrome out. Naturally, as a Mom of a kid with Down syndrome, I was upset. So, I started digging.
I found the "Plans to..." article easily enough as it had been quoted by every Down syndrome advocate blog from here to China... another country that keeps coming up in this discussion due to their "one child only" policy... but I digress. The article uses some pretty inflammatory language, yet offers little or no proof that this is happening. For example: "Since 2004, when Denmark decided to start controlling the number of children born with Down syndrome, the cases have fallen by around 13 percent annually." Wow. I immediately went looking for anything that would outline this policy for me. I didn't find anything other than a couple of studies evaluating the effectiveness of Denmark's new prenatal screening programs. I did find an article in the Copenhagen Post, quite probably the one that started the whole mess. "Down's syndrome Dwindling". It offers up the same statistics that the studies did and oddly quotes the same people... a full month before the "Scancomark.se Team" wrote their article. Aside from possible accusations of plagiarism, the "Plans..." article is little more than spin... to incite and inflame. Which in a community of genuinely concerned parents, if you'll forgive me for saying so, isn't all that difficult to do.
The women in Denmark, just like the women in Canada, are offered free prenatal screening and care. They do not have to participate, but not surprisingly, most do. Here in Ontario we have IPS or Integrated Prenatal Screening. They test for Down syndrome, Trisomy 18 and open neural tube defects (Spina bifida). I've been through it twice, once per pregnancy. It is not government mandated, many women don't bother with it (usually for religious reasons) and many, like me, use it for informed choice. Healthcare professionals here are mandated to provide all options to the patient for an informed decision. That is what this whole thing is about: choice.
I have always been "Pro-Choice". That does not mean that I promote termination of all pregnancies, that means I promote choice. Options. As in what you want to do with your body is up to you. Subsequently what I choose to do with my body is up to me. The abortion rate for Down syndrome fetuses is somewhere around the 90% mark; that does not surprise me. I am not and no one else should be here to tell you what to do if you find yourself in those shoes. But, that is only one choice. The other provides the opportunity for informed parents and the creation of support systems prior to the birth of the child. If there is one thing that I wish I had, it was more time before they were born.
As it turns out, prenatal screening caught Wyatt early on. When we visited with the genetic counselor however, we were told that with all the factors, the odds of him actually having DS was 1:300 (down from 1:125). You can read the whole story here. With those odds she wasn't even going to suggest amniocentesis, not that we would have taken it as the risks of a miscarriage due to the amnio were much higher than actually having a baby with DS. Then there was Twin B to think of. They would want to do amnio on both of them. We made our choice and said no thanks. Maybe if there had only been one baby, maybe we would have pushed for the amnio. I don't know. I don't know what we would have done because the circumstances were so different. Either way, we would have had to make a decision. Which is what we did. Then we got on with our lives.
If it hadn't have been for my OB sending me for a fetal echocardiogram, we would never have known about Wyatt until we got into the delivery room. Instead we had a month to prepare ourselves and get our heads around the fact that we were going to have a baby with special needs, not to mention a congenital heart defect. That helped. I will also note that I made two other choices in there: when I went to Sick Kids to meet with the fetal cardiology experts, it was brought up that I would have a "very strong case" for late termination. I would meet with an ethics committee who would hear me out, if I chose and it would most likely be approved given the circumstances. I didn't even let him finish.
Later on, my OB suggested that I could have amnio at 35 weeks; I didn't let her finish either.
I made my choices and I am so very glad I did. Wyatt is a happy, bright little boy who's heart has defied the experts. He has taught me more about life in the six months that he has been on this earth than I could ever imagine. I am proud of all my kids as they delight me daily; Wyatt is certainly no exception to that. In fact, just like everything else he has done so far, he goes that extra little bit and teaches me joy.
Prenatal screening is important so that whatever your decision, whatever your choice, it is informed. What you don't hear people talking about is the opportunity it provides to get to know more about and bond with the little person. With most women in Ontario, their IPS ultrasound is the first one they have had in their pregnancy. It is the first time they hear that heartbeat and see exactly what is going on in there. It was during my IPS Step one ultrasound that I found out [read: confirmed] that I was having twins. One generation ago I would have been completely stunned when I found all this out in the delivery room. I cannot fathom that level of unpreparedness!
What you will find me bemoaning is the lack of research and support for post-natal care. Dr. Costa's research is a step in the right direction, however it is funded. I don't want to change my son, I would like him to be the best that he can be. If that means I give him an antidepressant or an anti-Alzheimer med every day for the rest of his life, then so be it. I don't have any wild delusions about how he will be helped by this, I'm not expecting algebra. However, if it means the difference between him articulating a thought or feeling clearly or not and becoming very frustrated, you'll forgive me if I choose the former.
It's entirely possible that Denmark will be DS free by 2023. It's also possible that they will still be an insular society of very calm northern people with wild, Viking roots. Let's face it, at no point in my life have I ever heard "F☠ck this! I'm moving to Denmark!" Down syndrome could quite possibly be rarer there than snakes in Ireland. However, maybe not. Maybe some will choose differently. That would be up to them.
Prenatal screening is not the enemy here. Ignorance and "knee-jerk" reactions are. Advocacy may take on many faces, but none of them should be wearing blindfolds. Instead of crying over who didn't come to the party, let's focus on and celebrate the ones that did attend. Let's make those people's lives better and brighter. As a mother, I want my children to realize their potential. As a mother of a child with Down syndrome, I want my son to be able to reach for any star he chooses. It's my job to make sure that he is given everything to do just that. I won't be able provide what he needs if I'm living in the dark and busy theorizing about what the neighbours might do.
It upsets me when a whole community, regardless of the cause, gets up in arms about misinformation. It also upsets me when individuals represent themselves as one thing when they are really pushing the agenda of another. These are difficult shoes that I walk in; I'm not going to insist that anyone else walk in them or judge them when they choose not to. Informed choice is one of the most basic rights that we in the Western world have. I urge you to exercise that right and to educate yourself as much as possible whenever possible.
Especially when it comes to the kids. Especially when those kids have DS.
There has been a lot of buzz in the DS community lately. It started with an article in the NY Times Magazine about Dr. Alberto Costa and his search for a drug that would help increase the mental functioning of those with Down Syndrome. There have been some advances in prenatal screening published in the meantime. Then this story hit: Plans to make Denmark a Down syndrome free perfect society. That prompted Margaret Somerville, the founding director of the Centre for Medicine, Ethics and Law at McGill University to write this article for the Globe and Mail. Based on her article (the only one I read initially), it sounded like the Danes had taken a page out of the Nazi Eugenics Handbook. The article alleges that prenatal screening in Denmark is used for the sole purpose of wiping people with Down syndrome out. Naturally, as a Mom of a kid with Down syndrome, I was upset. So, I started digging.
I found the "Plans to..." article easily enough as it had been quoted by every Down syndrome advocate blog from here to China... another country that keeps coming up in this discussion due to their "one child only" policy... but I digress. The article uses some pretty inflammatory language, yet offers little or no proof that this is happening. For example: "Since 2004, when Denmark decided to start controlling the number of children born with Down syndrome, the cases have fallen by around 13 percent annually." Wow. I immediately went looking for anything that would outline this policy for me. I didn't find anything other than a couple of studies evaluating the effectiveness of Denmark's new prenatal screening programs. I did find an article in the Copenhagen Post, quite probably the one that started the whole mess. "Down's syndrome Dwindling". It offers up the same statistics that the studies did and oddly quotes the same people... a full month before the "Scancomark.se Team" wrote their article. Aside from possible accusations of plagiarism, the "Plans..." article is little more than spin... to incite and inflame. Which in a community of genuinely concerned parents, if you'll forgive me for saying so, isn't all that difficult to do.
The women in Denmark, just like the women in Canada, are offered free prenatal screening and care. They do not have to participate, but not surprisingly, most do. Here in Ontario we have IPS or Integrated Prenatal Screening. They test for Down syndrome, Trisomy 18 and open neural tube defects (Spina bifida). I've been through it twice, once per pregnancy. It is not government mandated, many women don't bother with it (usually for religious reasons) and many, like me, use it for informed choice. Healthcare professionals here are mandated to provide all options to the patient for an informed decision. That is what this whole thing is about: choice.
I have always been "Pro-Choice". That does not mean that I promote termination of all pregnancies, that means I promote choice. Options. As in what you want to do with your body is up to you. Subsequently what I choose to do with my body is up to me. The abortion rate for Down syndrome fetuses is somewhere around the 90% mark; that does not surprise me. I am not and no one else should be here to tell you what to do if you find yourself in those shoes. But, that is only one choice. The other provides the opportunity for informed parents and the creation of support systems prior to the birth of the child. If there is one thing that I wish I had, it was more time before they were born.
As it turns out, prenatal screening caught Wyatt early on. When we visited with the genetic counselor however, we were told that with all the factors, the odds of him actually having DS was 1:300 (down from 1:125). You can read the whole story here. With those odds she wasn't even going to suggest amniocentesis, not that we would have taken it as the risks of a miscarriage due to the amnio were much higher than actually having a baby with DS. Then there was Twin B to think of. They would want to do amnio on both of them. We made our choice and said no thanks. Maybe if there had only been one baby, maybe we would have pushed for the amnio. I don't know. I don't know what we would have done because the circumstances were so different. Either way, we would have had to make a decision. Which is what we did. Then we got on with our lives.
If it hadn't have been for my OB sending me for a fetal echocardiogram, we would never have known about Wyatt until we got into the delivery room. Instead we had a month to prepare ourselves and get our heads around the fact that we were going to have a baby with special needs, not to mention a congenital heart defect. That helped. I will also note that I made two other choices in there: when I went to Sick Kids to meet with the fetal cardiology experts, it was brought up that I would have a "very strong case" for late termination. I would meet with an ethics committee who would hear me out, if I chose and it would most likely be approved given the circumstances. I didn't even let him finish.
Later on, my OB suggested that I could have amnio at 35 weeks; I didn't let her finish either.
I made my choices and I am so very glad I did. Wyatt is a happy, bright little boy who's heart has defied the experts. He has taught me more about life in the six months that he has been on this earth than I could ever imagine. I am proud of all my kids as they delight me daily; Wyatt is certainly no exception to that. In fact, just like everything else he has done so far, he goes that extra little bit and teaches me joy.
Prenatal screening is important so that whatever your decision, whatever your choice, it is informed. What you don't hear people talking about is the opportunity it provides to get to know more about and bond with the little person. With most women in Ontario, their IPS ultrasound is the first one they have had in their pregnancy. It is the first time they hear that heartbeat and see exactly what is going on in there. It was during my IPS Step one ultrasound that I found out [read: confirmed] that I was having twins. One generation ago I would have been completely stunned when I found all this out in the delivery room. I cannot fathom that level of unpreparedness!
What you will find me bemoaning is the lack of research and support for post-natal care. Dr. Costa's research is a step in the right direction, however it is funded. I don't want to change my son, I would like him to be the best that he can be. If that means I give him an antidepressant or an anti-Alzheimer med every day for the rest of his life, then so be it. I don't have any wild delusions about how he will be helped by this, I'm not expecting algebra. However, if it means the difference between him articulating a thought or feeling clearly or not and becoming very frustrated, you'll forgive me if I choose the former.
It's entirely possible that Denmark will be DS free by 2023. It's also possible that they will still be an insular society of very calm northern people with wild, Viking roots. Let's face it, at no point in my life have I ever heard "F☠ck this! I'm moving to Denmark!" Down syndrome could quite possibly be rarer there than snakes in Ireland. However, maybe not. Maybe some will choose differently. That would be up to them.
Prenatal screening is not the enemy here. Ignorance and "knee-jerk" reactions are. Advocacy may take on many faces, but none of them should be wearing blindfolds. Instead of crying over who didn't come to the party, let's focus on and celebrate the ones that did attend. Let's make those people's lives better and brighter. As a mother, I want my children to realize their potential. As a mother of a child with Down syndrome, I want my son to be able to reach for any star he chooses. It's my job to make sure that he is given everything to do just that. I won't be able provide what he needs if I'm living in the dark and busy theorizing about what the neighbours might do.
It upsets me when a whole community, regardless of the cause, gets up in arms about misinformation. It also upsets me when individuals represent themselves as one thing when they are really pushing the agenda of another. These are difficult shoes that I walk in; I'm not going to insist that anyone else walk in them or judge them when they choose not to. Informed choice is one of the most basic rights that we in the Western world have. I urge you to exercise that right and to educate yourself as much as possible whenever possible.
Especially when it comes to the kids. Especially when those kids have DS.
I was linked via a crackbook group, and I must say, I am awestruck by this.
ReplyDeleteWhich part? Thanks for stopping by. :)
DeleteI guess at that point the "Welcome to Holland" analogy of DS will have to be rewritten! lol. Lovely writing!
ReplyDeleteThanks. :)
Delete@Golden - FYI - Holland is the Netherlands, not Denmark.
ReplyDeleteMy son with DS is 14, and like you, if there had been a safe cure available, I would probably have chosen to give it to him when he was one ... or two ... or any age where we were the sole decision makers. Now, it would have to be his choice, but I would support it either way.
I've learned a lot over the past 14 years, and I can certainly say that having a child with a disability has enriched my life; but, when I think about a "cure", I tend to think about what I would want if I were my son.
The problem with the "choice" issue is that many women really aren't given a true choice. While many would choose to have an abortion if they understood their choices, many are given very poor information, so their choice to abort is really forced upon them.
I didn't know my son was going to have DS. I could have chosen to find out, but I didn't. I didn't have that need to know beforehand. It sounds like you were offered a choice, but it wasn't pushed on you. I've heard a lot of stories from women who really received a lot of pressure to abort - some weren't even asked if they wanted to schedule an abortion; they were asked when they wanted to schedule it, as if it were the obvious decision.
So, I think some of the passion against prenatal testing comes from those experiences. I also think that some of it comes from fear of losing funding. You mention funded research, but who knows how long the funding will remain? It's already miniscule compared to autism. The funding for research and funding for services could dry up for those who choose to not accept "the cure".
It's a fine line to walk between being pro-choice and understanding the true experience of having a child with a disability like DS - so full of challenges, but at the same time a very enriching experience where we learn so much and appreciate so much that person in our lives who isn't really all that much different from those of us who just got 2 21s.
It's true. I also believe that there are many woman out there (for a variety of reasons, not just prenatal screening) that are pressured to terminate a pregnancy. Potentially having T21 is just one of the reasons.
DeleteI am hoping that parent advocates such as ourselves will continue the interest and make sure DS gets the funding it deserves. Everything goes in and out of fashion, sadly.
I believe Golden was referring to the "Welcome to Holland" story that can be found on my resources page.