January 22, 2006 12:04 PM
Down syndrome and prenatal testing
A reader wrote:
Hi Barbara,I just read in Children's Ministry magazine this statistic.
Can you tell me whether this is true? (They were actually quoting Child magazine)
92% of parents whose fetuses were diagnosed with Down syndrome during prenatal genetic testing elected to end the pregnancy.
I find this shockingly high. Do you think this is a true statistic?
You have written extensively on both Down's Syndrome and Abortion I figured you would have the facts.
Barbara, I am grateful for your compassionate heart (reflected in your actions) and your gift of words to speak on behalf of these children I don't have any Down Syndrome children myself but I have interacted with them enough to know that they are a blessing on this big earth.
I spent about 15 minutes trying to track down research for this, but with no success. And this is the kind of distraction I need to be careful about :) so if someone else out there has the answer to this, please post it in the comments here.
I will say that this is the figure I hear all the time. And note that the US does not like to keep statistics on abortion (gosh, I wonder why?)
I know a lot of people say they will not terminate a pregnancy based on results, but opt for testing "so they can be prepared." Once they get the results, however, under pressure from professionals who may not understand the spiritual ramifications of abortion, many solid Chrisians end up aborting (may God have mercy on all whose fear is greater than their faith).
I think it's a whole different story when you're holding your baby in your arms and have begun bonding before you get the news. Which is why I think that Christians who really mean what they say about accepting any child God sends them should avoid the tests - period. [Note: to correct this over-simplification, see Jennifer's comment below - but still, I think too many Christians panic with the results and simply cave.]
One of the most wonderful resuts of having this space to share my thoughts with readers - including trying to deprogram women from years of brainwashing by our culture that Down syndrome is something to be frightened of - is receiving mail from those of you who've told me that you are no longer afraid!!!
There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. (1 John 4:18)
We mothers are on a spiritual journey in which we are constantly being stretched and strengthened in our ability to love through any difficulties - to love to the best of our ability as God loves us. I have no illusions that in God's eyes - what with my own spiritual and emotional disabilities - I am any less disabled than those whose disabilities may be more apparent to the eyes but less apparent in their hearts.
Posted in Disabilities, Down syndrome, Pro-Life Issues | Permalink
Comments
On the flip side, prenatal diagnosis can save lives- lives of baby and of mother. They aren't just testing for Down's. There are some conditions, like my daughter's, which can be fatal to mom. There are some conditions, like spina bifida, that can be corrected while baby is inside its mommy's womb. I would never EVER terminate a pregnancy for Down's, but I think those kinds of tests can be helpful for other conditions.
Posted by: Jennifer | January 22, 2006 12:42 PM
I have read the same thing, Jennifer. I was reading a nonfiction book called Baby ER that had a woman in it whose baby had a heart defect which needed monitoring, and they ended up needing to do heart surgery while the baby was in the womb to prevent the baby being born prematurely and needing to have surgery right after a premature birth, which the baby probably would not have lived through.
So there are important reasons to get tested.
Posted by: Gen Schmidt | January 22, 2006 1:17 PM
Jennifer-
you are right, of course. I wasn't thinking. I've noted that in the entry. But let's pray for anyone getting what they immediately think is "bad" news that they will find courage where they might have thought there was none.
Posted by: barbaracurtis | January 22, 2006 1:21 PM
I think it would be helpful to know to which test this statistic refers. It is probably amniocentesis, which is the final, definite diagnostic test for DS.
I had the AFP (alpha-fetoprotein) test at around 16 weeks. I think this test is frequently done for pregnant mothers who are 35 or older. This resulted in a ratio that gave "the odds" that our son would have Down syndrome. I think spina bifida may also be diagnosed with this test. Depending on the situation, some doctors may go on and do ultrasounds at various stages.
My impression is that many committed pro-life parents do not have the amnio. They can get the information they need for health reasons from the AFP and the ultrasounds.
Many, if not most, parents who go ahead with the amnio, are having it because they are open to ending the life of their baby, if it has Down syndrome. Thus the statistic.
This, of course, is not always the case. I had a friend who had a child with DS, and just wanted to be prepared, in case of a second one.
Amnios in the past have (sligtly)increased rates of miscarriage-- so for a pro-life parent, there have been more arguments against them than for them. I think a new test has been, or is being, developed that is just as accuarage, but less invasive.
Posted by: Julana | January 22, 2006 2:34 PM
With our first child, we had the Quad screen which came as standard prenatal testing. When she showed increased risk for T18, we did a level II ultrasound. When, in that ultrasound, she showed markers for T18, the doctors told us that even though we said knowing for sure what was wrong with her wouldn't make a difference in how we would proceed, they said that it would help them in treating me and our baby when it came time to deliver. So, we had an amnio. Turned out, it was worse... much worse then we thought. As her 2nd birthday is tomorrow, I'll just say that anyone who wants to know the whole story can visit my blog.
With our second child, we had the First trimester screen which involved an ultrasound and a bloodtest. Our son was normal, of course, and there was no risk posed to him or me because of the non-invasive nature of the test. Even though I still worried about him for other reasons, I knew that he was okay, at least chromosomally. It helped me. Prenatal testing may have saved my life.
BUT, I'm one of the rare cases. There are no statistics on Triploidy because babies with that condition rarely live beyond 8 weeks gestation. I wouldn't make my case the norm. I'm definitely the exception to the rule.
Posted by: Jennifer | January 22, 2006 6:08 PM
Barbara, I think this is a great time to share how the Lord used you to prepare me for our blessing.... a couple of years ago, I read an article updating anyone of interest regarding Josh & Noelle (Wheeler) Goforth's premature son, Baby William. She shared that while she never would have *asked* God for a special needs baby, she has been honored that God blessed her with this special son. I told the Lord that I didn't have the faith to *ask* for a special child either, but I was willing, if that was His will.
Fast forward a few months and I was looking for information on Montessori training and tools. I found your old website and ended up reading your essay "My Little Extra". I cried. Happy tears. I asked the Lord if he would bless us with a special baby like that.
Not long after, I learned I was carrying our sixth child. It was a very different pregnancy and I felt strongly in my heart that perhaps this baby would have Down syndrome... of course, I didn't know... and we skipped the tests. When he arrived (by emergency c-section) the OB said...'a beautiful boy!' And I surprised myself by grieving briefly that it seemed God chose not to bless us in an extra special way this time (please don't misunderstand... all my children are VERY special..).
While I was in recovery, the OB came in to tell me that they believed our 'beautiful boy' has Down syndrome. I couldn't believe the joy I felt! James arrived 13 months ago and has been a tremendous blessing to us all...all his siblings say he is 'extra special' too.
Just a few folks said something like 'what a tragedy' or 'I'm sorry' and we were prepared... ready to tell them that we knew we were BLESSED, in an 'extra' special way.
Thank you for your efforts to share the word about special children!
God bless you
Posted by: StephanieS | January 22, 2006 6:42 PM
Personally, I have opted not to have the AFP test with all three of my pregnancies. My feeling has always been that I would not want to have a follow-up amniocentesis (due to the risk, however slight, of miscarriage) in the event of a positive result, which would leave me with the option of wondering whether or not my child had problems for the remainder of my pregnancy. (When I declined the AFP during my last pregnancy, my OB/GYN said that yes, ultrasound would likely reveal a neural tube defect or Down Syndrome).
My main concern with the AFP test is the way in which it is presented to most women. The test is often put forth as something that has to be done, rather than an option, and the high rate of false positives and follow-up testing is not discussed until a mom-to-be has a positive result.
In an ideal world, these tests would be offered purely to provide the best possible medical care for mom and baby. Unfortunately, they are being used as a way for doctors and insurance companies to protect themselves--understandably so, when in our society attorneys have argued and won cases regarding "wrongful birth."
Posted by: KatieButler | January 22, 2006 7:31 PM
Just an FYI- there is a less than 1% that an amnio will result in a miscarriage. You probably have a greater chance of injuring your baby in a car accident than with an amnio.
But I hear you Katie- with my first pregnancy, the AFP was presented as a standard test. With my second (and a new OB), it was presented as an optional test. I opted for it because its just a blood test. Our first trimester screen already revealed no chromosomal issues, but it was nice to have the extra reassurance.
There is nothing in the world like losing a deeply loved and wanted baby halfway through your pregnancy. It effects every single aspect of your life. It shakes you to your core. And when the next child comes, you are more than terrified of going through that pain again. I opt for anything that's going to reassure me that my baby's okay or prepare me for the worst. I, for one, found that knowing the worst was better than not knowing. Of course, not everyone's like me.
Sorry to go on and on about this. Its my beloved Grace's birthday tomorrow, so its on my mind.
Posted by: Jennifer | January 22, 2006 9:47 PM
My website is a how-to guide for parents who are carrying a pregnancy to term after a fatal diagnosis. Our daughter was diagnosed with anencephaly at 22 weeks (her brain and skull hadn't developed) and there was no doubt she would die within hours to days after birth. We carried to term and she lived in our arms for two hours.
I have met far too many parents whose doctors were using the prenatal testing as a search-and-destroy mission. The scare tactics and verbal assault used against the parents were unbelievable: doctors calling women idiots for refusing to terminate; a doctor who told a woman that the "baby's jagged skull" would "rip out her cervix" if she went to term; no doctors that mentioned increased risk to subsequent pregnancies if the woman forced her body to deliver at 21 weeks; doctors who only presented the absolute worst-case scenario; and almost across the board, doctors who gave families the impression that they would have their baby delivered and then be emotionally abandoned by the medical establishment to watch their baby die.
I had a medical professional tell me my daughter wasn't a human being. A doctor told me to my face that my daughter would be "pretty hideous." (Emily wasn't, FWIW.) It wasn't until we saw the high-risk doctors at a terrific hospital that we finally encountered some compassion. But even there, the booklet they gave us was called "A Time To Decide" and featured stories from parents who'd gotten negative diagnoses--and there were three stories for every kind of medical termination under the sun, but only one for going to term, and THAT was done solely for "religious reasons" with the implication that smart people simply hit the eject button on the defective fetus and get themselves a nice shiny new one. :-b
I've seen statistics that 95% of babies with Down Syndrome are aborted; I've seen statistics that 99% of babies with anencephaly are aborted, and yet it seems from comparison between the pro-life anencephaly group and the mixed termination-and-full-term group that it's only about 65% of anencephalics who are delivered immediately after diagnosis.
There are very very few conditions that can be treated in the womb. Studies have shown almost no difference between outcomes between babies who were tested prenatally and babies who were not; the only major difference was more c-sections and more terminations in the prenatal testing category.
Granted, anencephaly is fatal and Down Syndrome is not. But the scare tactics seem to be the same.
Jennifer, thinking of you on Grace's brithday.
Posted by: Jane Lebak | January 23, 2006 7:54 AM
While I don't have the time right now to read every single somment here right now I do want to say that even the Amnio test is not 100%. I personally now a woman who had been told as a result of her blood work that there was a possibility of the child being Downs. She opted for the amnio to know for sure. The results told her the baby was a girl and was definitley Downs Syndrome. She opted for abortion. My heart sank. Because of the stage of the pregnancy and the process of the abortion, she basically delivered a premature baby - it was a boy and perfectly normal (she took one look at him an demanded tests be run). To this day she is suffering psychologically from her guilt.
I am also fearful of any test more invasive than bloodwork. There are just too many possibilities of danger. I agree that there are some reasons that one may opt for those tests. I myself have not had any of those, but I had one pregnancy that was a very scary one, up to the moment of birth. I contracted Fifth Disease while 15 weeks pregnant with my third child. Of all the odds and all the statistics, we were one of them. My baby contracted it and we had weekly ultrasounds to watch the development of her heart as she was fighting to live and fight congestive heart failure from within the womb. I finally told my doctor I couldn't do it anymore; I couldn't come in every week to watch her die. My doctor broke down into tears, sad that I had not understood why we were doing this. We were watching to see if she was strong enought to go to Nashville for a total intr-uterine blood transfusion. by prayer and the blessings of God we did not have to undergo that surgery and all the possible outcomes that could result. We made it to 34 weeks and because of the complications to both of us I was induced and the moment we were separated we both began to heal. She was early; she was tiny; she was beautiful; she was strong for her size; she is now a very healthy, active, smart litle 6 year old. Neither of us had to stay even one extra day in the hospital. They x-rayed her lungs and heart at birth and the day we were dismissed and the improvement was so great that we got to go home. She did suffer through RSV her first winter when she was three months old, but we never had to fight fo rher life then like we did while I was pregnant with her.
I praise God that we were able to do even the bloodwork because I know that we could have lost her if we hadn't, but I don't know what I would have done, what decisions we would have made, if we had to consider undergoing an intra-uterine blood transfusion at 24 weeks. I'm not sure how I would handle the risk factor and the outcome possibilities to the 'wait and see' factor of faith. I was blessed with not having to make that decision as her heart was affected, but never so greatly that we had to think that she could die any minute while I carried her if we didn't have the surgery.
Posted by: the SmockLady | January 23, 2006 12:09 PM
wow, that's incredible about the amnio with the false info on the downs girl (last comment)
my wife and i were just told two weeks ago that our unborn daughter (about 20 weeks) has down syndrome. we were devastated at first, but after a long weekend of soul searching, we realized there was no way we could terminate the pregnancy.
the more we research and the more we discover, the more excited we are about this baby and all she will bring to our lives.
not sure about the 92% figure, i've read more around 85%, i think different countries have different #'s. one thing i do know is that the new rate they came out with, that 1 out of every 733 children are born with DS, is one out of every 733 live births, which means this # does not take into account all the children aborted in the womb.
our genetic counselor was very kind and gave us a good amount of info, but i definitely feel like she emphasized the termination option, i tried to bring up the bright side, that children with DS have unlimited potential, nutritional intervention, physical therapy, etc., but she seemed focused on the health concerns.
anyway, we're hoping for the best and ready to love our child no matter what. still tough though.
sorry for the long ramble. aloha....
Posted by: joe malone | January 23, 2006 7:26 PM
As a parent of a ten year old daughter who has red hair, and also DS, I have to comment that there is nothing that could have prepared me prenatally for the reality of having a child with an extra chromosome. The "information" you are presented with is very cold, sterile, and of course definitly biased toward termination. My child is a child - more like other children than different. Her extra chromosome is a fact of her life, just as is her flaming red hair. You learn the reality by living with it - certainly not by having some pamphlet given to you nor by having someone quote statistics to you. She is very different from many other children with DS, just as all children are different.
Posted by: Emily's Mom | January 27, 2006 9:10 PM
