Ending Down's syndrome pregnancies bears all the marks of a pogrom
I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live.
This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable.
Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children.
I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings?
Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom?
Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home.
These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections.
Read the full article.What do you think? I'd love to hear your thoughts on this article. I'd also be interested to hear your thoughts on the topic of prenatal testing for Down's syndrome. Do you think this testing is a helpful thing? Why or why not?
posted by Crystal Paine at 8:23 AM
24 Comments:
Thanks for posting this. I have a nephew who has Down Syndrome and he is such a blessing to our family. When he was born my brother and his wife rose to the challenge and soared like eagles. They are wonderful parents not only to Joshua but to their other 3 children. When my sister-in-law was pregnant with her 2nd child, she was asked if she wanted to be tested to see if this baby had DS and she said that she didn't because she would keep the baby no matter what.
Joshua is now out of High School and has a job. He is doing great. Best of all he is very faithful in his Bible reading and testifies how God changed his life. Thank God for bringing him into our lives. We are better for it!
Great article, Crystal.
I am so glad to see that this appeared in the Dallas Morning News- apparently Dallas (with all its Bible Belt accoutrement) is the nation's headquarters for the reproductive technologies that slowly erode our culture's concept of the dignity of human life.
This version of "choice" is frightening to me on so many levels. Where does it stop? Who decides what is an acceptable "disability" and what is not? If today we are aborting Down's Syndrome babies who is to say that tomorrow we won't be aborting babies with cleft palates, lower than average IQs, or brown eyes? Am I the Creator? Do I get to decide what is right and what is a mistake?
I am grateful for my baby girl but would be no less grateful if she had Down's Syndrome or some other "imperfection." I refused all such screenings when I was pregnant and will do so again if we are blessed with another child.
Our second child, Natalie, has a rare syndrome that means she'll have similar limitations to a Down Syndrome person...so I speak from personal experience. We didn't have a "choice" because we didn't know of her syndrome until she was born, but I agree that taking the choice that doctors want to offer is the mark of a Godless society. Without God, we can't really expect people to value all human life.
We're pregnant with our third child now. We have declined all genetic testing for this birth (I'm 39 years old) and pray for God's blessings on this child and our home.
I don't allow my doctors to use any of these tests. I know it would not change anything and I don't want to have all those months to struggle with the worry and fear. I know God will give us the grace we need to handle any problems when they occur.
I have an honest question. I don't have children yet but hope to in the near future. Does anyone feel there is any merit in having the tests done mearly so one can be as prepared as possible if the baby does have a problem? I feel that I'm the sort of person that would want to do all of the research I could ahead of time so I would know how to best meet the needs of the child. Just curious.
With my third child I had some odd hormonal levels. The doctor thought that I was pregnant with twins. I got an ultrasound and I was pregnant with one. My hormone levels were similar to twins or Trisomy 21. I got further testing which said that it was possible that my daughter had trisomy 21. My husband and I got an amniocentesis. We needed to know. If we were prepared we felt we could get into a support group, tell family and friends, etc so that we would be okay when the day came. After the amnio I was put on bedrest (there is a less than 1% chance of miscarriage) and a dear friend took care of my kindergartener and toddler. The amnio came back without any problems. She was born tiny (but full term), because of my hormone levels, and strangers would assume she was a preemie. She is relatively healthy with only Asthma. I would get tested all over again. My husband and I would not have gotten an abortion but we would have needed time to adjust to the idea and time for us to adjust our lives.
Lisa mom of 3
I always try to refuse any of these types of tests during pregnancy. Many tests tend to be wrong, and you have a mother worrying throughout her pregnancy for no reason. If God sent me a child with special needs, I would rather find out at the baby's birth. I would not love him or her any less.
These tests are not conclusive. They have extremely high rates of false positives. I wonder how many "normal" babies are killed because of a false positive.
I've heard the "I want to prepare myself" theory. I think it's another deception. Instead of enjoying a pregnancy I'd grieve through it. And perhaps unnecessarily. It also raises the temptation of an abortion- as much as I want to believe it would never be a thought...it just might. And it puts a mom in a situation of having to defend her decision to a very persuasive medical community.
I've refused testing on all 3 of my babies. Other than ultrasounds - cause those are just fun!
While I definitely would not abort, no matter the outcome, I can definitely see the advantage of being prepared for the situation ahead of time. If you've seen 99 Balloons, the video about the baby Eliot with trisomy 18, you know that his parents did find this out and were prepared for any eventuality (well, as much as one can prepare). Although I've declined testing with previous pregnancies, this movie made me rethink whether or not to have the testing done with my current pregnancy.
Cathy
I feel like I have so many things to say...My situation is a little different than some...Not only do I have a brother with Down Syndrome, my parents CHOSE to adopt him knowing there would be specific challenges ahead. He is now 22 years old, and has impacted our lives in countless ways. His sincerity and gentleness abounds showing the grace of God at all times. He frequently tells me on the phone, "I pray for you". I know he does, he has taught me so much.
I am thankful that I am blessed with parents who said, it doesn't matter, we'd love him in our family, and taught my siblings and I, we are all different and special in our own ways.
As for the issue of testing or not testing; although at this time I do not have children, I do not think I would do amniocenteses. Although I know very little about it, I have heard that there are risks associated with it and no matter what the outcome of the test, I know the child is a blessing from God, Our Creator, who am I to say it is not worthy to live?
We had our 20 week ultrasound done a couple of weeks ago. The ultrasound showed that our baby has cysts on his/her brain, which isn't uncommon at this stage of pregnancy. However, because babies with trisomy 18 and trisomy 21 are often found to have these cysts, my doctor told me that there is a slightly increased chance of our baby having one of the two.
This made us think about all the possible outcomes, and the conclusion that we came to is that no matter what happens everything will be okay. We've been given the gift of a child, no matter what the circumstance is. We turned down any further testing. What would we do with the information? After all we knew we'd keep the baby no matter what. Then there was the question of what if the test was a false postive and we spent time preparing and fretting for no reason?
Samantha - Kaitlynn's sonogram revealed the same thing - she had three or four large cysts in her brain at her 18 week sonogram. I have heard that these are actually quite common and they don't have an explanation for them. Supposedly if your baby does not have any of the other signs of Trisomy 18 or 21 showing up on the sonogram, they very likely are do not have either of these.
By the way, I failed to say that we decided against further testing after consulting with a few different sources. We had gone in for a sonogram in the first place to make sure my uterus was okay since I'd had some bleeding. Since everything else looked okay, we just left it in the Lord's hands.
I didn't get any testing done with our baby. We're just trusting in the Lord.
It is sad that approx. 90% of Down Syndrome unborn babies are aborted. However, I don't think it is a justifiable cause to end prenatal screening. It's just an unfortunate reality. (Is the saying "the ends don't justify the means?")
Also remember, many babies have been saved by prenatal screening. Medicine has come so far, that babies can recieve surgeries while still in the womb.
I just wish people would not use the advancement of medicine for evil purposes. :-(
Aisha
Crystal,
I think that if God blesses me with children, I will do the prenatal testing (unless it's risky), so I can better prepare for raising a child with special needs. I can then contact support groups, do research in advance and pray. But unfortunately, most of these screenings have only one purpose: eliminating such children.
Yes, it is a pogrom. It is similar to what was going on in Nazi Germany: rating people as 'more valuable' and 'less valuable', and deciding who has the right to live and who is too much of a burden and should be eliminated. We all know how it ended.
We refused prenatal testing with Katherine. In general, I think we will do so with future pregnancies as well. Especially the early tests. If something were to look terribly wrong on an ultrasound or if I were to have other symptoms that indicated a major problem, we might consider some further non-invasive testing. Like a new life said, there are in-womb surgeries that can be done - and that's a wonderful advancement in medicine, used for a positive purpose!
But in general, we will continue to turn down prenatal testing.
Part of my degree in college is Special Education, and I cannot tell you what a BLESSING it is to work with these youngsters. I feel that I am humbled every time I get the chance to work with exceptional children. Testing for Downs? I feel two ways - one part of me feels that it should be done, just to let the parents prepare for the baby they are going to have (assuming they would keep the child); the other part of me feels that the parents shouldn't be able to find out, just so they wouldn't abort the baby... what a sad world we live in!
Ashley
Well, I am a doctor myself (emergency room doctor, but I had to do a lot of OB/GYN as part of my residency), and I had the "triple screen" blood test during both of my pregnancies to screen for possibilities such as Down Syndrome. I wanted to be as prepared as possible. Screening (and by screening, I am including the use of ultrasounds as well) is important because some babies with Down's and other disorders are born with potentially life-threatening complications that can be corrected if they are done soon after birth. Just because someone has a screening test, whether the triple screen blood test, ultrasound, or even amniocentesis or chrorionic villous sampling, does not mean that person would or should abort a child with a disorder. I would not fault anyone for simply wanting to be prepared, as was my intent. It is a personal choice between a woman and her husband.
Valerie
Crystal,
Thank you for opening up a conversation about prenatal testing, and the Christian response. I'm 27 weeks pregnant right now with our first child and opted not to have the standard CVS testing early in my pregnancy. (Chorionic villus sampling (CVS) is a prenatal test that detects chromosomal abnormalities such as Down syndrome, as well as a host of other genetic disorders.) My husband and I read the information about the CVS testing and what it can reveal, then I had only one question for my doctor. "Would my care change now and during labor/delivery if these tests come back positive?" He said absolutley not. The medical care I receive is the same, whether our child has down syndrome - or another genetic disorder indicated in these tests - or not. So, we opted not to have the tests. My doctor encouraged me that many mothers are now choosing to opt out of this testing because we'll keep our babies regardless of what the tests indicate. All children are precious blessings from God in each unique, precious bundle He sends!
I never had any prenatal testing. My feeling was knowing wouldn't chage anything and why not allow my family to enjoy the pregenancy. There would be all the time in the world to deal with it when the baby was born.
I did have a child with a severe brain abdnormality- which would not have shown up on prenatal testing- and I am glad I didn't know. I am so happy I was able to bound with and enjoy her while I was carrying her. It made the fact that our time on earth was short - 6 months- all the more intense. I am not sorry with my decisions. I had two healthy boys the same way. If I were to get pregnant again I don't think I would change my course.
My youngest is 2 and has down syndrome. When I was pregnant with her the dr.'s noticed some abnormalities, but nothing life threatening so we did not do any further testing. If we had seen something serious I would have only allowed non-invasive test to see if surgery was needed. I think testing just to see if a child has "anything" is wrong. We love Kaitlyn and wouldn't change her for the world!!
Amanda L.
I have not been in this situation but if I was I would want to know before the birth in order to be prepared. Parents need to be taught how to help a down's syndrome baby develop, it's harder work but it can be done. It's too much to land them with this in their ignorance when the baby is born. The problem is not the tests but the attitude towards, and the ignorance of, down's syndrome.
I'm a little late commenting on this, but I thought I would add that if you choose to get the testing, be prepared to stand up to bullying and not let the medical folks decide what you do. I found with my first pregnancy (which ended in a miscarriage) that the doctors were very pushy about the testing and not happy to hear I would not abort. They insisted that I reconsider. They also pushed me into an unnecessary D&E (for their own profit?) by scaring my husband with the remote possibility of complications for me. As it turned out they caused more trouble with it than it might have avoided.
I'm at the beginning of a new pregnancy, and along with choosing different medical care, I'm pretty sure I'll avoid any testing except for ultrasound. I know the heartbreak of miscarriage and I can't see increasing the risk just to gain some information I wouldn't act on anyway. The possibility of helpful surgery is an interesting consideration, but I suspect the probability of that is even more remote than that of a test-induced miscarriage. I've learned it's important to remember that I get to make the decision, no matter how much the doctors push. I hope that thought helps somebody!
Jennifer
Post a Comment
<< Home