Will babies with Down syndrome slowly disappear?

Written by Brian Skotko, MD, MPP

Children’s Hospital Boston Clinical Genetics Fellow, Down Syndrome Program

Brian Skotko, MD, MPP

Last week a breaking study in the British Medical Journal offered a glimpse into our reproductive futures: soon, a non-invasive test will allow expectant mothers to know whether their fetus has Down syndrome.

Current prenatal tests for Down syndrome are invasive and can potentially cause a miscarriage, making them undesirable for many women. But now scientists have learned how to quantify the fetal copies of the 21st chromosome, the genetic basis for Down syndrome, with a simple blood test taken in the first trimester. These tests would be safer, faster, and, most likely, cheaper than anything available today.

While the research brings a scientific breakthrough, the prenatal tests also usher in a provocative question: will the births of babies with Down syndrome begin to decrease because of this testing? Since the new tests are non-invasive, researchers believe that the overwhelming majority of expectant parents will pursue such testing. And, with the tests being safer and cheaper than current methods, insurance companies will most likely have no problem defraying costs for anyone who wants one. As a result Down syndrome will most likely become a prenatal discovery for nearly all pregnant women. And, when prenatal testing does confirm that the child will be born with Down syndrome, more expectant parents will need to decide:  should we continue or terminate our pregnancy?

Part of their decision will be based on the information they receive about Down syndrome from their medical providers. Yet, the majority of medical students argue that they get minimal education on children with intellectual disabilities; and nearly half of obstetric fellows claim their residency training is “barely adequate” to “nonexistent” in terms of how to counsel would-be parents of a child with intellectual disabilities. Some physicians who do routinely deliver a prenatal diagnosis also admit to purposely describing Down syndrome in negative terms. Not unexpectedly, then, many mothers feel that they receive inadequate, incomplete and sometimes offensive information about children with this condition.

Currently, 92% of all women worldwide who receive a definitive prenatal diagnosis of Down syndrome choose to terminate their pregnancy. Based on those numbers, what does the future hold for the Down syndrome population once the new prenatal tests are available? The answer lies nestled in profoundly personal decisions, but still raises an important question, one that will be asked more and more frequently as other forms of prenatal testing come to the market: which forms of human genetic variation are valuable, and which are not?

These will be private and difficult decisions for parents to make, but at what point should our professional organizations weigh in? Should expectant parents be able to select out fetuses based on the sex alone? Should an expectant mother be allowed to test her fetus for an adult-onset condition, like breast cancer? If genes are one day identified that shape a person’s sexual orientation, do parents have the right to know that information prenatally? The questions are endless, but the time is ripe for us to discuss them. Let’s begin those conversations now, before the tests force us to do so.

72 thoughts on “Will babies with Down syndrome slowly disappear?

  1. So they will know. Will that make it right not to let them be born? If you don’t want to risk the birth of a handicapped child, please don’t become pregnant. God controls the world!

  2. People with Down syndrome are misunderstood. If you look at the facts that one in 733 live births a child with Ds is born. And 92% of mothers who get the diagnosis abort. They are supposed to be here, and they are not birth defects!

  3. Down Syndrome kids are the best ever they are just like other kids we can all love each other and they really teach you how to LOVE someone

  4. I have a 6 year old son with Down Syndrome…I copied and pasted part of my response to a friend that shared this link on facebook…..

    I often tell my friends who are having to cross this bridge (aminio etc, testing) and my answer is always the same….if there was a test for Luekemia to know that your baby may have that fight ahead, or a test to know if your child will drown in an horrible accident, or car accident or if they will commit suicide as a teenager or become paralyzed from a diving accident, autism….and the list goes on and on…would you then also decide to test for those things….would you then decide to terminate the pregnancy? Of Course not! Life happens to all of us…..being a parent comes with all these risks….as parents….we love our children unconditionally….extra chromosone or not! I wouldnt change EZ for ANYTHING in the world!!

  5. I have a son with Down Syndrome and wouldn’t change a thing about him. He loves unconditionally, is the most loving, caring, sweet little boy and he brings joy and happiness to everyone he meets. God gave him to us and we count ourselves very blessed. Ask a parent who has a child with Down Syndrome. The medical field is only beginning to see what our kids can accomplish!

  6. In the business of our daily ‘human’ lives, we measure everything and everyone. They are either too small, too short, too big… as we continue to depreciate the value of a human being. We forget that a life is a life. Please, let us simply remember that every life is precious. Every life. The value of a life is not and should not be measured by the amount of the years and accomplishment, but simply because every life is precious and made at the image of a Greater Being. Science is not doubt connected to that Greater Being. When we look at the immense universe, many of us can see even without our eyes that this Greater Being is at the center of it all. Our children with Down Syndrome are more special and precious than any “perfect” test, and in the eyes of their Creator, they are perfect.
    In the eyes of their parents/families, they are simply what we called “L-o-v-e.”
    Thanks to all who continue to work wholeheartedly to advocate for, educate, support those with disabilities, most certainly those with Down Syndrome. Thank you for your loving dedication.
    Every day I get up and I do it for my very special daughter. She is that special to my heart. She opened my heart to what I didn’t think was possible to much love and courage.
    Only an x-tra chromosome … and that is the only difference.

  7. Thank you for addressing this issue, Dr Skotko and for your books, appearances and articles emphasizing the positive aspects of life loving someone with Trisomy 21. As the mother of an 8 year old girl who is also dedicated to speading this good news, I can verify that life with someone with ‘designer genes’ is challenging and rewarding, but entirely worthwhile.
    Things have never been more promising for people with Trisomy 21, educational, social and medical advances have improved their lives immeasurably in recent decades, and I would love an opportunity to share this with medical students. If they only know Down syndrome as a list of symptoms and prognoses, they only know a tiny fraction of the truth.

    You raise an interesting point by comparing screening for Ds to screening for adult onset illnesses. I inherited a strong tendency towards type II diabetes, and have developed it in my forties. If my parents had known this would they have chosen to allow me to be born? I certainly hope so. MY life has been worth every finger prick and every doctor visit.

  8. I work with developmentally disabled adults, and have witnessed the lives of numerous individuals with Down syndrome. I can honestly say I have fallen in love with each person I work with.
    I have watched them in their prime, helped them to acquire new skills, taken them for testing for Alzheimer’s disease and held their hands during the process of dying. I have developed close relationships with their parents, brothers, sisters and each family member I’ve spoken with has said that they would never have wished for a “normal” child. Even though the individuals with downs have lived a shorter life their loved one with Down Syndrome has filled their life with more love and joy than they could have ever imagined.
    I myself do not have children, but if I were to chose to become a mother I would feel blessed to have a son or daughter with Down Syndrome.

  9. My little man will be 13 next month… it is so hard to believe. We did have the testing while I was pregnant and it was a false negative. I am so glad that it was a false negative… i honestly at that time do not know what i would have decided faced with that information. I will tell you that my son has been a complete joy in our life and help to keep us on our toes :)) He is very anamated, friendly, silly , lovable , loyal , mischievous … just a precious gift. He is my 3rd out of 4 children and when our last one came along we told them not to even do the test …. It didnt matter either way.

  10. as a mother of a young man with the extra chromosome .. i did not findout till after and wouldnt have it any other way … i can saythis because my previous son they offered to do it and i said why i wont change anything if its so…. and then they didnt offer it with him and he had it … i can tell you from experience that they need to educate early and not in a negative light but in a more realistic way … some might say to even the stakes more … i say to be more accurate … i cannot think if anyone that i know or who i have heard about who regrets their child .. think about this people are we going to go the next step and say … ok lets test for this andthen next wewill test for diabetes and cancer andthen when we have a closer to perfect child we will continue and weed out all the kids till they are so called perfect … i choose to believe my children were created the way they were supposed to be .. and i thank god for making them what they are and i accept them unconditionally…..

    1. I adopted an “imperfect” child. He had congenital scoliosis. Had he not lived, everyone who’s lives he touched would be so much less richer. He was a gift to everyone who knew him. Sadly, he passed away April 2009. Not from scoliosis, but a complication of it.

  11. The root of the problem with the pervasive ignorance surrounding Down Syndrome lies squarely with the medical profession. Patients come for expert advice, and advice is given, but it is so far off the mark from being “expert” in this matter it almost constitutes malpractice. Eunice Kennedy managed to enlighten the world, except for the medical profession it seems. I am a college professor, a Ph.D. who teaches and does research in Molecular Biology and Biochemistry, and who specializes in developmental biology. The advice I got from my OB was appalling and based completely on ignorance, which she may or may not have learned in medical school. That same prejudice was encountered over an over again – statements presented as fact that were absolutely untrue! I find this pervasive predujice in the medical field shocking and almost criminal, when one contemplates the advice given and the resulting consequences. The question not posed by them is: Do people with Down Syndrome deserve to live? I shudder to think of what their answers might be.

    1. I appreciate your comments Dr. L. Our son has endured two heart surgeries and has nonverbal autism. But he is communicating via AAC supports. There is alot of assumption out there that he has less to contribute than his typical sisters. Who says? On talking on behaviors, I had one doc tell me right to my face (with my son standing in the room) that spraying water in his face would help deter a certain behavior. What the hell was she thinking saying that? My son cannot speak, but he can hear and understand. I think there needs to be more of an understanding of what people like my son are capable of. We need to teach tollerance and respect and communication. This is a great topic of discussion. Isn’t CHB here to serve ALL children? The diversity is what makes it all worth while. Let’s keep the discussion going. We will get there one person at a time.

  12. We are one of the 8% percent of people who learn of their child’s DS diagnosis prenatally, & choose to keep the baby. We have never, ever been sorry. Our son is the joy of our lives. I want to thank Dr.Skotko for continuing to be such a tremendous adovate for individuals with Down syndrome & the people who love them.

  13. I have written a small paper titled: I wouldn’t change a thing; no one chromsome! – it’s the story of my son, William; and how I declined testing; how I wasn’t trying to have more children and even now.. If you asked me today if could make him “typical” would I, my answer would be NO – because then he is not William… and I love William as he is – all aspects of him, the good, the hard, the bad, the wonderful, the challenging.. all these things are what him great – Barbi Beard-Wolfe

  14. Really,people with Down sydrome are described as very loving and happy people that love unconditionally,If God wants us all to love as he loves, WHO Has the Wrong amount of chromosones? Just think, when we get to heaven we might be suprised to see everyone there has Downsyndrome,God creates everyone, my husband and I are HONORED,Blessed, and humbled to be the parents of a fifteen year old son who has Down syndrome. He can read write , in line skate like no one’s business. We have found true joy in our son, we won’t have to worry and wait up for him to come home in the wee hours of the morning , very unlikely that he will drink,smoke, . and he Always wants to hug us and tell us he loves us (how many teens,or some adults do that? Our son (and I’ll just about bet, most persons that have Down sydrome ) is (are) the epitimy of what love’s really supposed to be , unconditional , always forgiving , and ever present. I have been told many,many,many times it takes special people to be chosen by God to have a child who has Down syndrome , I did not feel special ,but now I do. Who else do they have to testify how a medical abnormality really isn’t one. It’s a miracle anyone is born let alone an extra special child with extral special chromosones ,again who’s really the one’s who have the “wrong” amount. Is’nt love what life’s really all about ? what a great diservice have the parents done to them selves who choose to terminate a pre diagnosed baby who has Down syndrome, what a pitty to pass up such a gift from God

  15. What a sad world this will be if this does in fact happen…I have two boys, my youngest has DS. I love him. Period.

  16. I think the problem is much deeper than the comments here. I think it comes down to many parents (but certainly some) wanting that perfect baby. And this is just one way to get that perfect baby. Anything less than that is seen as being a burden to a type of lifestyle. I think even if parents were told of the many positive aspects of life with a DS child, many would choose abortion. Sadly entitlement is a big part of our culture today -especially entitlement to children and certainly perfect children.

    All you parents of DS children – you are brave warriors! God love you.

  17. I was told with both of my boys they had a good chance of having down syndrome. I refused to have an amnio done. both boys came out normal and healthy as can be but I was prepared if they turn out otherwise. They were still going to be my babies. Even after my first son was diagnosed with autism, he’s still a perfect child. We are chosen to be parents of handicapped/sick/delayed children for a reason. There are so many things that can change your “perfect” baby… why be afraid of raising a child with down syndrome….

  18. If you can prevent suffering, wouldn’t you? Perhaps something like Type II diabetes — a disease that is usually adult-onset and easy to manage with proper attention — wouldn’t be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

    I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind — most people with down syndrome are incredibly nice — but are all the struggles they go through worth it? Wouldn’t it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?

    1. you are very ignorant. that is what we nesd to abolish.. ignorant people such as your self. maybe they can some day fined the gene that makes “normal” people stupid and parents can terminate those pregnancies.

    2. “Wonderful and kind.” “Healthy.” “Normal.” Like most people, right? Wouldn’t it me “nice” if most people were normal, healthy and kind? Wouldn’t it me nice if we could prevent suffering and abolish everything that is “clearly problematic?”

      Let me ask you, @Themodernsound, who gets to say what’s normal and problematic? Are we all supposed to be the same size, the same level of ability, the same color, the same religion, too?

      This wonderful, messy, unkind and problematic universe we live in is full of order and chaos, suffering and joy, birth and death and diversity. These are the things that will never change.

    3. Taking the Devil’s Advocate position here, but would you agree then that ALL children who go through “struggles” in life (cancer, breaking a leg, divorce or parents, watching a close family member die) should not be allowed to live their lives even with those struggles? “Typical” people go through hardships, as well. It’s not fair to say that one group of people should not be saved just because their life might be hard. I have yet to meet a person who did not have struggles and difficulties throughout their life. It is important to see ALL people (disabled or not) as people and not things that can be manipulated as if in a scientific experiment. And yes, those mothers most likely are biased, but they are also the ones who have the experience in this matter and not you.

    4. “If you can prevent suffering, wouldn’t you?”
      Who decides what is “suffering”? If someone decided that you are suffering from ignorance and an unhealthy and hitleresque world view (based on your comment)- would that be grounds for your termination?
      If that thought sickened you, maybe you felt a fraction of what a parent of a child with Down syndrome feels when they read your insensitive and uneducated comment.

    5. EVERYONE lives and dies. They suffer at some point through their life. You just don’t want to witness it because you are a coward.

    6. And I would say that when you deliberately kill 92% of a population, you are committing genocide. Your reasonable-sounding words are nothing but a candy coating over a core of murderous fascism. And typical.

      1. Midianranch, you absolutely have the right to disagree with Themodernsound, but stooping to the “murderous fascism” comment really doesn’t further the discussion.

        What do you mean by “92% of the population”? I don’t mean to be argumentative, but I don’t see where that statistic is and would like to understand where you’re coming from.

        I commend parents of children with DS and respect the the love that they have for their children. I also have met people with DS and agree that they are very loving people. But I can see where themodernsound is coming from, at least in that there are other health problems associated with DS. Also, what if you’re a to-be parent who doesn’t believe they’ll be able to provide adequate care?

    7. as serious and disabling? I suggest you educate yourself a little more before spouting off such ignorance! The only suffering i truly think they experience is from ignorance of people like yourself. Don’t spew such ignorance if you haven’t truly educated yourself.

    8. I want to thank you, Modern Sound, for sparking a little revolution. I posted your comments on my blog, and had so much feedback that I followed it up with another post. I asked for parents to send me something to respond to you..what I got was over a hundred responses. I hope you’ll come see what you started…http://babynumber10.blogspot.com

    9. Where do we draw the line on what defines suffering and what makes a life not worth living? You mention Type II diabetes. What about Juvenile Diabetes? What about cancer that affects children? And on, and on…. Should those children never have lived because their lives include suffering?

      Those among us who wish to avoid “suffering” or struggles of any kind cannot truly live. Suffering is a part of life and we all experience it in many forms. And what is your personal knowledge of Down syndrome if you feel it is “clearly problematic”? Unless you have Down syndrome or live with someone who does, you cannot speak to how the condition manifests.

    10. So if you were diagnosed with cancer and had to go through agonizing chemo and radiation and constant puking your guts out and everything else they have to endure, would you let someone kill you and put you out of your misery? I wouldn’t! The problem with people now days is simple….. people want to play God, and they are standing on dangerous, dangerous ground when they try to. God put that life there and He put it there a little different b/c in His perfect wisdom He knew that is the way that person needed to be. Why? Maybe that’s not meant for us to understand… but one day we will stand before the Lord and answer to Him for the decisions we made here on this corrupted earth, I would hate to have the blood of an innocent, beautiful childs life on my hands!

  19. This just makes me sick…it was just 5 months ago when my 24 year old brother with Down Syndrome died for a seizure in his sleep while on a family vacation. This was very unexpected…not a moment goes by I don’t think of him and thank God for our special gift! WE were the SPECIAL ones because we had him in our lives! I thank God everyday for that special gift! Anyone who has a child with Down Syndrome is truly blessed!

    1. My brother died many years ago at age 24, too. Sorry for your loss, but so happy you shared such a loving life with him during his 24 years.

    2. Your comment about your brother is so sweet! I am the mother of a son who is 30 years old and has Down Syndrome. He is the youngest of six children. Since the other children have been grown and on their own for years, my husband, son and I have become a “threesome” instead of a “twosome.” Our son is a remarkable young man who loves to serve God by running the sound system at our church, shaking hands as people come in the door, being an usher, and just being an all around helper. I know that he has touched the hearts of many people. Your brother was blessed to have a family who loved him so much. And indeed, you were blessed to have had him!

  20. When I was pregnant with my son, I did not receive the then-available AFP test because I knew, although his existence was the result of a welcome surprise and I would be doing the lion’s share on my own, I did not care to know what developmental challenges or gifts he might bring to the table- I would love him anyway, he would be welcome in my arms & in my heart. I realize I am different than many but I feel like if the expecting parents knew what I know and what others here know, the termination numbers would be much lower than 92%. As we move forward to be able to test for more and more “undesirable” traits, I wonder what the future will look like for my grandchildren. Imagine a world where everyone goes to Harvard and becomes a doc, but no one can fix a toilet when plumbing goes awry… Thinking that will not be good. The world needs all kinds; with different passions, different loves & different abilities. It’d be a shame to “weed” any out.

  21. I normally do not comment but felt I needed to here. I have a 30 year od brother with Down Syndrome. I have had a huge part in raising him and can honestly say he is my world. Over the past 30 years I have watched society learn to embrace people with disabilities and have help fight many battles in this area along the way. When I was pregnant with my first child 10 years ago my husband and I needed to know what our decision would be before we even had the test done. It was very difficult to even discuss options as I had a brother I love and cherish but could I raise him and a child with Down’s as well? No matter what anyone’s choice is it is their choice. I guess I am saying that if a mother becomes pregnant by accident but is not ready to have a child for whatever reason she has the right to terminate her pregnancy. So if a mother is not ready for the challenges of raising a child with Down’s do we have the right to take that choice away? For a child with Down’s to thrive they need a parent who is there to fight and face those challenges as it is a very long road that does not end when they turn 18, 30, 50 or even 80 and if someone is not willing to do that it is not fair to that child. I do believe anyone given any genetic testing should have a specialized counselor with the doctor when the news is given to have all the facts positive and negative as there are a lot of positives!!! We have come a long way in 30 years but we can go so much farther!

  22. This is absolutely horrific. My sweet girl has DS and she is 4 years old. She has completely and totally changed my husband’s and my life for the better. When I found out prenatally that she had down syndrome, I thought my life was over, but my religious convictions and value of human life would never have me even consider a “termination” as the medical professionals like to call it. The problem is most of my doctors thought I was crazy. They were encouraging me to terminate, in other words, kill my daughter. I want to reach out to those moms who felt like I did who maybe feel like they need to listen to their doctors. I want to be a voice of reason, a voice of hope, and voice of encouragement because my life is better than I ever could have hoped because of my Emma. Maybe this will convince you… my husband and I are now actively pursuing the possibility of adopting a child- with down syndrome. That should give you all a clue of how awesome this journey truly is.

  23. 35 years ago, there were no resources, no eduction, no support for parents whose children were born with DS. I lived near a facility back then that parents would literally dump their children with challenges off at for the government to care for them. Most of those beautiful kids never saw their parents… the nursing staff became their subsitute parents. My oh my how times have changed. My eldest grandchild has downs, and is a blessing to us. While I understand that the medical profession is required to give patients the worse case scenario due to possible malpractice suits, I believe that parents should also be given the resources to see that these kids are not the burden that we have been led to believe. Potential is what you expose your child to, they soak it up and never look back. They are first and foremost children…. the additions are only burdens only if you allow them to be.

  24. I am the mother of an almost 4 year beautiful girl with Down Syndrome and she is my biggest joy. I found out in the 16th week of my pregnancy that she had DS and my doctors pretty much scared me to death with all the information they had on DS. They talked also about the risk of losing my pregnancy and stillbirths. Crazy! I still decided to have her and that is the best and biggest choice I have ever made in my life. I think doctors needs to learn more about Down Syndrome so they can better educate expectant mothers with useful information rather than all negative information. I love my little girl and I wouldn’t change a thing.

  25. “should we continue or terminate our pregnancy”?….to this day I am grateful I declined prenatal testing. I did my research when my daughter was diagnosed at 3 weeks old–it was enough information that I am POSITIVE the “risk” of a Down’s kid will NEVER outweigh the life of a child. I’m not going to tell you that she is a different “blessing” of a child. She’s a pain in the ass just like your kid, and I love her more than my life. Don’t let your fear or your vanity rule your decision.

  26. I am at a loss for words that so many women will get ‘rid’ of their baby because a test says they their child might not be ‘normal’. I was asked each time with my 3 girls. I told them no. I will find out the day I deliver them. I will love them no matter what. They are my babies. I got a strange look everytime from the nurse. None of my girls were born with Down Syndrome. If they were I would take it and go upon with our lives. God bless each and all you you great parent with such loving children. =)

  27. Hi, As I am typing this my 5 month old baby girl sitting on my lap. And Yes maybe some of you guessed she has a down syndrome. Has it been easy? NO, But she is the best thing that happened to us. She is my life, and my little sunshine, she makes me smile everyday. My baby has 4 brothers and 3 sisters and they adore her and see no difference, she is their baby sister. I love my baby girl and you know what, she is no different than any of my other kids. There is a lot of services available and this children are as normal as any other kids.

  28. my child was prenatally diagnosed with ds and my perinatologist personally asked not to do anything in a rushed decision, i waited for the test but already knew in my heart that my baby would be bornwith ds. i say to this day THANK YOU to dr.craig kalter of florida perinatal associates, bcuz if i had not done as he asked i would not know that this the truest form of love could exist for me. and i say thank you again dr. kalter for helping me see the love and blessings from god that is my daughter with ds.

    1. FYI : re “this guy.” I think you’re referring to the photo of Dr. Skotko above. He is a very strong advocate for people with Down syndrome. His sister has Down syndrome and he has become a major player in trying to get doctors to give expectant parents positive information when they receive pre-natal diagnoses. We need to support folks like him!

  29. This information was very hard to read as a mother of a child with Down Syndrome. I think they should not even test prenatally, and I think the Doctors need to inform parents of the positives not only negatives of children with Down Syndrome. If the information out there wasn’t all so negative I think less would abort. This really makes me sick to think that children with Down Syndrome may not even have a chance to live in the future!!!

  30. It seems like the conversation here is mostly focusing on prenatal testing for Down Syndrome and other types of chromosome disorders so that is where I will focus my comment.

    I think it is important to remember that advancing different testing options are designed to give families choice. Each person has the choice to decide if they want the test and the choice to then decide what they want to do with that information. Is it also fair to say nobody is allowed to learn about potential complications during their pregnancy because people can use this information to make decisions about termination?

    The beauty of medical decisions is that as patients we often have the right to choose to learn what we want to learn (when testing is available and accurate) and to then use that information and take action. That action can be preparing for a baby with special needs, meeting with a specialized medical team to talk about surgeries, or finding the right pediatrician who is sensitive and caring for children with Down Syndrome or other disorders. Can we see that these tests can be used in many different ways? It’s not all about termination or keeping a pregnancy, it’s also about education, support, and knowledge.

    1. I agree with you, however the problem is the remarkable concentration on advancing this testing while the education of those giving the results still greatly being stuck in the 1960’s. I used the test in the way that you described in your third para – however the majority do not. Their decision is made after hearing a Dr. (who only sees pregnant women or babies) tell them their child will only be a burden, a blob on their couch, will never walk or talk, will be stricken will all sorts of illnesses/ailments, will wreck them financially, will ruin their marriage….all ACTUAL statement given to women within the past decade and all are completely factually WRONG). How about we shift some of the focus and $$ toward finding ways of heading-off some of the medical problems SOME of our kids have or for reducing/eliminating the developmental delays?

    2. It’s kind of funny that people will kill a defenseless fetus so they do not have to deal with becoming attached to a real person who may or may not have a complicated medical issue or cognitive delay. Sounds very weak to me.

    3. I agree with you and also agree with Jen’s reply as well. I don’t think the answer is vilifying the tests, I for one am grateful for the medical advancements we have today. Without them, our life expectancy would be back in the 30s and 40s. The problem is the lack of education, awareness, and support that should go hand in hand with all the testing. How many of us actually understands our own blood test results without grilling our doctors for answers? All testing should have appropriately literature accompanying them. When we receive a vaccine or a prescription, they hand us papers explaining about them. Testing should be no different, and when the results come in, more information should be given relating directly to those results. Most people either have a computer or access to one, so giving them a web address or two should suffice, but also having some printed pages to hand out to those that don’t have or can’t access a computer should be standard practice. Web pages can be easily updated and links to many related sites could be added and would be incredibly helpful. What people choose to do with what they find out is up to them, that omnipresent greater power also gave us free will, but at least they will be more informed and better prepared to make a decision, and if need be, put them in touch with support groups that will help them. So rather than attacking the testing, the scientists, the doctors, and the confused and possibly scared prospective parents, we should focus our energies into pushing for those informative websites and literature to accompanying those tests. Push for more training for our medical professionals to keep them updated, and be able to point people to good, informative, unbiased websites. We can’t expect them to know everything, but they should at least be able to help us get whatever information is needed. Most importantly, we need to push for awareness. Whatever the condition – Downs, Asthma, Diabetes, ADD/ADHD, Cancer, Missing limbs, Heart Disease, whatever it is, it’s a good bet that unless people are exposed to it up close and personal in their own lives, they don’t know as much about it or think about it as often as those that live with it. Doesn’t make them bad people, just human. So let’s try and be more tolerant while we’re all getting educated.

    4. If you re-read the article you will see that Dr. Skotko is simply saying that doctors themselves and parents that have received either a pre or post natal diagnosis of Down syndrome received it in a negative manner. The focus here should not just be on the “medical advancements”. If someone started any conversation with “are you sitting down?” or “I’m sorry to tell you this…”, you would likely feel upset or sad…so let’s use what you say about “education” and do what Dr. Skotko suggests…EDUCATE our doctors on how to deliver the diagnosis in a caring, informed and educated manner. Starting with “I’m sorry to tell you this” and not having current information about Down syndrome is what leads many people to an uneducated decision to abort. I applaud Dr. Skotko for devoting his time to educating doctors about delivering an appropriate and educated diagnosis of Down syndrome.

    5. The problem in my experience and it seems that of many people here is that although the testing can be used to educate many in the medical profession use the out come to try and convince us to terminate. It should be our decision but doctors tell you such horror stories that its hard to believe anything good will come of this child’s life. I found out my son had DS after he was born and even then the doctors were extremely negative about it. IF and I stress IF the drs involved were properly educated and giving a true story instead of a very negative one sided story I would agree with your idea but that is so rarely ever the case that parents may not be using it as a way to get the perfect child but the medical profession sure does pressure us to terminate if its not what they percieve to be the perfect child.

  31. I am also one of the 8 % of parents who found out before my child was born that she would be born with Down syndrome. My daughter is 10 now. Personally, I wanted to know what to expect before giving birth and I’m glad I was prepared when she was born. She was also diagnosed in utero with a heart defect. I’m glad we knew about that, too, so she could be closely monitored before, during and after the birth. We chose to find out all of this information before her birth in order to be prepared. Ours is not the typical path, obviously, since we’re part of the 8% and not the 92%, but I believe it is every parents’ right to choose what is right for their family. In my view, this question — to test or not to test — is more about affirming one’s right to choose than it is about affirming the “right to life.”

  32. Parents of children with DS: Get your kids out there! Introduce them to everyone, be very active with your kids. The more people your kids touch, the more people will know that DS is not a big deal. People have a right to make their own choices. We have the obligation to educate everyone who doesn’t know the joy of loving a person with DS. Our pop culture is very often the only education most Americans get about most topics. Therefore, the more we see our kids with DS in TV shows, catalog ads, TV ads, movies, anywhere that typical kids appear, our kids should appear too. Exposure is the most effective way to educate people and shape their opinions.

    1. Thank you for your post. Thats what I do everyday. I take my 5 month old baby girl anywhere I go. I am not ashamed of her, I am proud of her. And you are right 100% DS is not a big deal!

  33. I have a 6 month old little boy with down syndrome and it makes me sick that 92% of women pregnant with a down syndrome child choose to abort. That is the most horrible thing I have ever hear. I wouldnt trade my son for anything.

  34. People argue that the decision a woman makes about termination for fetal anomalies is between herself and her doctor and does not constitute eugenics or anything of that nature. I beg to differ. With public health care, prioritization of surgery (rationing) is based, in part, on the “values of the majority of the public.” When over 90% of women choose termination the value of the majority is made clear. A doctor who develops priority strategies told me directly, “infants with Down syndrome get the gold treatment…for now.” Public health care combined with majority choices are a lethal combination for children born with conditions that many say are “preventable” through prenatal testing and termination.

  35. I have an 8 month old baby with Down syndrome. I would say to that 92% that the baby you are carrying is a living human being with a soul. And one day, you will stand before God and that child. You will have to look that child in the eyes, and explain to them why your were so selfish that you could not give that child a chance to live. That’s all it is, pure selfishness. I feel sorry for anyone who is that selfish, because it wil haunt them for the rest of their life. If you are not capable of providing or caring for that child, there is someone else who would LOVE to. Put that child before yourself, that’s what good mothers do. Good mothers do not murder their babies just to make their life a little easier.

  36. I have a 2 1/2 year old son with downsyndrome. He is the best thing that has ever happened to me. Sure, life would be a lot easier with the ‘perfect kid’,but in my eyes, he is more then perfect. God gave him to me, and I am the luckiest mommy ever. He is always happy, and has a positive attitude. He is such a character. For those of you that would abort a fetus based on ANYTHING period, you are sick, and arrogant. The only possibility to abort a fetus, and I mean ONLY, would be if your child was going to be a vegtable. My son has to try twice as hard everyday then those of us without downsyndrome. But he deserves a life just as much as anyone in this world.

  37. Interesting. The root of the problem here is not lack of understanding of Down’s Syndrome. The root of the problem is a lack of respect for human LIFE. No baby, regardless of how it was conceived, what problems it might face, what color it is, what it’s sexual orientation might be later in life, etc… should be aborted. Period. That is where the true problem lies: that we, as a culture, think human life is expendable.

  38. Wait a minute…did I read right? Did he just say, “which forms of human genetic variation are valuable, and which are not?” VALUABLE???? Human life is intrinsically valuable, period. Valuable because it’s HUMAN!!! Not because it’s “intellegent” (whatever that means), beautiful (however that’s defined) or because it makes a lot of money, etc, etc. With or without an extra chromosome, human life is valuable. I could defend my point by saying that raising my son with Downs has been the most enjoyable thing I have ever done, and that, quite frankly I feel somewhat sorry for those who have never known that joy,and that would be the truth, but that is not what gives his life value. He, like the rest of us, has value simply because he IS, and nothing more. To assign value or the lack thereof to a human life using any other terms is to slide down a dangerously slippery slope.

  39. I pray that the 92% statistic is incorrect. It is a tragedy at even half that rate.

    If we all were a little mode like our chromosome enhanced brothers and sisters, the world would be a far better place and thoughtless articles like this one would never be written because the authors would be less arrogant and realize that all life is valuable.

    I was ignorant and did not value those who were created “different” from me, but I have been enlightened and transformed by my youngest daughter, who just happens to be blessed with an extra chromosome. My prayer is for those who may be considering abortion to not be selfish, fearful, nor ignorant. If they do go through with it and IF they end up in heaven, at least they’ll finally get to see their child as the beautiful creation that God does.

  40. I have a 16 year old son with DS, I would not change a thing about him. He is so loving and capable if only given the chance.

  41. The moral implications here are staggering. I have a 16 year old daughter with Down Syndrome. Who are we to decide when a gift from God is not “worth” bringing into the world? For the record, my child has no health issues now and receives no assistance from the government of any kind. She is less of a drain on society than the drug addicts having babies every year!

  42. Here in India, where I live, selective abortion is for getting rid of girls and the arguments for it are remarkably similar to those for aborting a baby with a disability. Girls are a burden, a liability, destined for a life of suffering and pain and no one wants them anyway. We have succeeded in skewing the sex ratio so dramatically there are many communities which now have to “import” women to marry their sons and violence against women has increased. The individual women who made their individual choices weren’t thinking in such global terms when they aborted their daughters, but every decision has consequences and many cannot be predicted.

    A world without people with Down Syndrome? Who knows what havoc we would be bringing on ourselves?

  43. I too, am the parent of child with Downs Syndrome. And if I could rewind and take another path, I would not. I would never change a thing. It has been a blessing to me and my family in ways that words cannot possibly describe.

    I have heard so many stories about how these little angels have changes so many lives, both family and community, alike. If, in a small way, what I have to share can connect with just one other person, who is struggling with his/her purpose in this overwhelming world we live in today, then my small contribution will be worth the time spent here. I wish there was more that I could do.

    This is my story…

    Like many others, with circumstances similar to ours, (a parent of a child with Down Syndrome), I have had too many heart-warming experiences to share in just a few short words. In truth, my five years with our daughter, Faith, would require a book. She has changed our family and made daily contributions to our wellbeing that can not truly be summoned up with simple words.

    We have two daughters. Our first is nine years old, and she does not have Down Syndrome. The other, our five year old, does. But perhaps the term that is more fitting for her condition should have been more appropriately named, “Up Syndrome”, as she seems to bring out the best in everyone she meets.

    There is a unique reality that happens when life throws you a curve ball, as anyone who’s been faced with something unexpected, such bringing a child into the world with any type of disablility, can tell you. More often than not, you tend to rise to a higher occasion. And more often than not, the purpose defines you, not the other way around.

    Prior to what might have seemed unfair to me, we lived a pretty normal life. My wife and I were late in forming a family, both in our thirties and full of ambition. We were a typical married couple whose primary focus in life was to rise to our greatest potential in our careers, which in itself had purpose, but not the kind that provided the deeper sense of meaning that would later consume me.

    At this time in my life, my choices were mostly selfish and—admittedly, narrow-minded. I was the typical, thirty something male, who set out, briefcase in hand, to prove his worth as a productive, hard-working, over-achiever. I was on a mission to make a name for myself, in an already complicated world that judges you by the success you achieve in your work place.

    It’s just the way we are wired and a simple reality that the pressures of providing for your family require of you in today’s fast-paced times. Not good, not bad—just life.

    Our first daughter was a tremendous gift to both of us. Her arrival, was preceded a year earlier by an emotional and heart-breaking miscarriage, of which we were still struggling to understand. The news of her appearance into our life was of great anticipation. But soon after our elation of this news, we found through a common procedure, that she had tested positive for Down Syndrome. We were shocked. Nothing in this world ever prepares you for this. In hindsight, it is probably this sense of the unknown that truly brings you to your knees. But, at the time, I had felt like every opportunity to succeed in my career had just hit a brick wall.

    My immediate concerns and emotions revolved around myself. “How was I going to live a normal life? How could I continue to strive in my daily goals now that we had to deal with a child that would likely require more time that I currently have to give? Why us?”

    I remember my most personal feelings, the day I learned of our “misfortune”, I began immediately reaching for an excuse that might allow me to find a way out. “This wouldn’t be fair to this child”, I surmised, “Life is already too hard – even without extra challenges. Maybe we should terminate—it would only be fair to this child.” These are feelings that I never shared with my wife. Though they were brief, to this day, I still thank God that a deeper sense of being, perhaps something beyond my own conscious, moved me beyond what I was and allowed me to accept this new reality as a choice that could have greater purpose in my life.

    Though I didn’t realize it at the time, later I would understand that “I” had much less meaning that “we” and that a much greater purpose in life was yet to be revealed—and it had nothing to do with my career.

    Within a few days, we accepted our destiny with open arms. There was elation. There was fear of the unknown. There was trepidation. But also, there was a very pure sense of excitement, which is hard to explain unless you’ve worn the shoes.

    We began to devour everything we could to learn about this life changing possibility and realized that as much as we learned about our future and that of our child’s, nothing is ever enough to prepare you for the reality of what is yet to come. Nothing can ever touch upon, nor measure the purest emotions and simple joys, that are both challenges and gifts—at the same time. The fact that bringing a child into the world that deeply relies, depends upon, and trusts you with all of their being is great enough a joy for any parent, but if I dare say so, the acuteness of this emotional connection is escalated to another level in parents caring for a child with a disability. This is not to say that the love is any stronger for one child, over another, just that your parental dependency seems to be tapped at a higher level. For me, though different of each parent, it was a moment of clarity. I came to realize, that in this new reality, my worth was more defined and different, possibly more valuable, than I had predisposed for myself.

    When we received the results from the amniocentesis, several weeks later, we where both shocked and in some strange way, a bit disappointed to learn that Baleigh did not have Down Syndrome. Something deep down inside a person who has prepared for a life altering situation, whatever it may be, often dies. It’s hard to explain, but similar to the miscarriage, I had set my expectations for something that was now part of my emotional being. Now it was not to happen. Between the relief that is felt when you learn that your child is healthy and the sense of confusion born by losing something that you’ve worked so hard to understand and accept, there is an emptiness.

    For the next four years, we lived, loved, laughed, played like any family does. Our little girl became our center of attention. She was healthy, inquisitive, curious and full of life. We forgot that she ever was to be any different that how she now is. We forgot that she had tested “falsely positive” for Down Syndrome.

    Then, unexpectedly, fate came our way. We had a new baby on the way and again, like her sister, she had curiously shown possibilities for having Down Syndrome. Having been through the experience before, we wrote it off as a false positive.

    The day before we were to find out that she might have Down Syndrome, I had been standing near the back of a long line of people waiting to get their coffee, most of whom, like myself, were looking impatient and disturbed that this wait was eating away at their precious day. I had a meeting with some important clients and knew that I could be using the “wasted” time to become better prepared.

    My patience was being tested…as I waited, I felt a light tap on my shoulder. I turned to see the smiling face of a young, twenty-something man, who proceeded to ask me what my favorite latte flavor was. I answered him with “vanilla, but not too much flavor, sometimes they are too sweet!” He smiled bigger and said, “Me too, but I really like them sweat.” I smiled back and turn around. A couple seconds later, another tap, followed by, “I really like this coffee place…” and a big smile. I returned the smile and said, “Me too, but I wish they would hurry up.” Continuing to smile, he shook his head in agreement, but I could tell that he felt differently. He was content with things just like they were. As a matter of fact, he seemed blissfully absorbed in the moment. We talked until I finally paid for my latte and hurried off to my meeting. All the while, not realizing that our perceptions were different. He was about to enjoy a luxury that many countries can not provide. He was starting his day with a simple but, to him, a meaningful conversation that meant he was capable of having feelings that made him who he was and me who I was. Life in this long, slow moving line, was “ok.” In fact, it was good.

    Later on, I would come to realize that this chance encounter was just as meaningful to me. He could have cared less about the line or the high-tech luxuries that will deliver his steamy dessert. He was simply glad to be who he was and where he was at that moment. I on the other hand, had hundreds of other thoughts rushing through my head, most of which were stressful—and now adding to the anxiety, was the 15 minute wait. I was thinking only about the loss of time, that I would never recover.

    I was not alone, I could see that others in our line felt the same; hurried, impatient, discontented. How busy have we all become in our day to day grind that we forget to look at the little moments, or even those a few minutes ahead that could bring a smile to our hearts. I had forgotten that I was fortunate enough to stand on my own two feet, in this line, and would soon to be sipping from a frothy warm drink that was designed to bring comfort to the heart and soul.

    The young man with whom I exchanged a few words while waiting for our coffee is still around. Every so often, I see him down at the coffee shop on the corner with his contagious a smile. He has Down Syndrome. He was born with a gift, somehow, he can see beyond even his own short-comings. Maybe we all have it backwards, maybe it us who is born with short-comings.

    I now, having become the parent of a child with Down Syndrome and it has helped me understand what I didn’t before about how we see things—or perhaps more so, how we don’t, but should. I’m still learning. But maybe because of my youngest, I’m fortunate to be challenged to learn just a little bit faster.

    The best things in life are the simplest. A good conversation. A warm cup of coffee. The sunshine. A butterfly. Licking your thumb before you turn the page in a storybook…my five year old went to great extremes and much exaggeration to show me she had picked that up from mom—a few days ago—and that she can do it too! She dances whenever she wants to and sings whenever she wants to, no matter who’s watching…and the list goes on and on.

    My cup of coffee now runneth over. I sit back and watch her get caught up in moments, some tiny, some huge and wonder what it’s like to see things through Gods eyes. And then, can’t help but wonder how much closer she must be to knowing the answer to that question than me.

    Everyday, I learn a little something more about her. I have accepted that she, just like the young man in line that day, must see things differently (usually better) than I do. And that somehow, in her being, that extra chromesome may be as close to a sixth sense we’ll ever know—a sense of wonder that never fades with age.

    I like to think that maybe that tap on my shoulder, while waiting in line that day, was a subtle hint sent from an angel above, telling me that it was going to be ok. Everything was going to be ok. Just live. Love. Smile.

    Ironically, and this one really gets me, I received that hint exactly the day before we recieved the news that our child would have Down Syndrome.

    Today, perhaps by fate, or coincidence, I look forward to and even long for that amazing tap on the shoulder at the end of each day that reminds me of the much bigger purpose in life than I had ever imagined for myself.

    What a blessing, I am still not sure how or why I was given this gift. I can only wish that you will be found, too.

  44. As the parent of fraternal twins-both having Down Syndrome- I have to say, when I was informed that my daughter most likely had DS because of the particular heart defect that was diagnosed in utero, the counseling I received was …limited.  When my children were born and they saw that my son had “features indicative of Down Syndrome”, the counseling was HORRID.  We were fed “facts” and “statistics” of one child having the genetic disorder and the other being “normal”…and then told that we’d beaten the odds (1:4,000,000) and had fraternal twins, both having DS, at the age of 22.  This “Counselor” went on to tell us that a large number of parents who, upon learning the diagnosis, left their children at the hospital and never came back for them. 

    Why would she say something like that to us?  Who teaches these people? Where is the compassion? I didn’t want her pity, but would it have killed her to break it to us a bit more ..diplomatically, if not compassionately? 

Comments are closed.