Tuesday, February 3, 2009

Will it make a difference?

I've been thinking a lot lately about the statistic that is out there about 90% of women who receive a prenatal diagnosis of Down syndrome terminate. Shocking isn't it? If you haven't heard of this before, I think it is. Of course I hadn't heard of this before we got our diagnosis but now when I hear it, I tend to take it personally. Like, my little Bennett isn't "perfect" enough for someone else so they would choose to end his life. Now before I go on I don't want this to turn into a debate of pro-life and pro-choice. What I want this to be about right now is the fact that there is simply not enough information for pregnant women on Down syndrome. Why do pregnant women need to receive information about Down syndrome you may ask? Well, because DS is one of the most common genetic birth defects and I think we would see more babies with DS if the termination rate was not so high. So if it is so common why can't there be some sort of standard pamphlet that is given to a women at either her first prenatal appointment or most definitely at the time when she is given her screening results that may show an elevated risk? When I was told I had a 1 in 10 chance that my baby had DS was I given any information on it? Not a single thing. When I went to see the genetic counselor, was I given any information there? No. Only after we did the amnio and found out the results and told the counselor that we would not terminate she then gave me a couple of websites to visit. That's it.

Once I told the counselor that we would not terminate I visited various sites, blogs, chat rooms and there I realized I had easily made the right choice. I saw that these babies and children were not all that different and they are not in mental institutions or group homes and they can learn just like any other child. They are adorable. They are lovable. They can contribute to society. On the other hand they can have heart defects and various other medical conditions but so can "typical" children so what's the difference? Why couldn't I have been given a simple pamphlet that described what DS was, what medical conditions that can occur but also that they can live a very full life. Show me some pictures in this pamphlet of babies with DS, what do they look like? Maybe some testimonials from parents who have been in my shoes. Give me both sides for goodness sake but don't just give me nothing!

I realize that doctor's offices cannot give out a pro-life pamphlet and that's not what I asking for, I'm asking for something that gives women a little education, (both sides, because frankly we aren't given both sides, we are given nothing which in turn I feel makes women feel like a DS diagnosis is hopeless and so they feel they have no other option but to terminate), education on a condition that happens probably more often than we know but we don't see it as much because sadly these babies don't get a chance.

I realize there are so many other fatal conditions that babies can have and women have to make very difficult decisions on whether to keep their baby but Down syndrome is rarely fatal, yet it is grouped in with all the other terrible conditions that an unborn baby can have. So I guess my question is, would this make a difference, giving some type of educational material to a women when faced with this very common chromosomal abnormality? Has anyone else thought of doing this or has someone started doing this? If so please let me know how I could get involved. I just really think people need to be more aware of Down syndrome and I fear that with all this prenatal testing that is offered these days specifically targeting DS with absolutely no education on DS offered, my little Bennett will be one of few!

On another note, I am not against prenatal testing and sometimes I feel that people think if you do an amnio or the screenings you would automatically terminate. That is not always the case. I am a need to know kind of person. I needed to know for sure what we were dealing with, to get myself and my family prepared and to have the best medical care readily available for when my baby arrives. I'm so glad I did not need a pamphlet to help me to decide but I know that many women aren't like that and I don't judge them for that but I'd like to offer help if they do need that kind of information before they make a huge decision that from what I have read so many times can be so devastating once the decision to terminate is made and is carried through. The babycenter website has a group called "Termination for Medical Reasons" and not all of the women on there regret what they've done but they are in pain and many terminated just for the diagnosis of T21 (Down syndrome). Maybe if they were a little more informed they would have made a different decision.


  1. Yes, Adrienne ... it is calling the Changing Lives program. Many DS groups are jumping on the bandwagon, so to speak, and starting to do this. Our group has a new parent brochure that Payton is on the cover of, actually, and I've been meaning to post it on my blog, so I'll do that later tonight for you to see. I'll sort of piggy back your post and tell ya a little more about the program too. :)

  2. BTW have you read the book Gifts? It is a book that compiles stories from 60-some moms of kids with DS. Let me know if not and I'll send you a copy. I was a contributor so I have extra copies. :)

  3. Hi! Congrats on your baby boy! I agree with Bethany that you should definitely read Gifts. It is by far my favorite book and I wish I would have been handed it in the hospital when we got Logan's diagnosis. Logan is now 20 months old and doing fantastic! Congrats again! We will be visit here often.
    Take care,

  4. I couldn't agree with you more. When I got my results from the geneticist, it seemed to me that she kept pushing for termination. I was over 23 weeks and she told me that there was one place in LA that would do late terminations. Never once did they give me any positive information. I am just thankful that I pursued talking to people with Ds children so I knew the truth about what life is like living with a Ds child. It really isn't any different. A friend of mine who is 18 weeks pregnant just found out her AFP test came back with a 1 in 10 chance of Ds and she said they rushed her in for her amnio and that concerned her. I told her that I am pretty sure it is so that they can give her the "option" to terminate before it is too late. However, I also reminded her that she still has a 90% chance that everything will be okay.

  5. Great post! I just found your blog thanks to Bethany! I have a son who just turned 4 and has Down syndrome and has had two open heart surgeries! His story is in the book Bethany talked about! Can't wait to follow your story!

  6. Thanks ladies! I have read "Gifts" and loved it. I've also read "Roadmap to Holland" which was a good read as well!

  7. Hi, just read about your blog on Bethany's. The statistics are scary and sickening, 90%, it's just wrong. I did not know before my daughter Ella was born that she had Ds, but I do know that had I known my OB would have pushed for an abortion (by some comments made after Ella was born.) Fortunetly for me I know that I would never terminate a baby (though I am Pro Choice) but there are many mom's out there that weigh heavily on the Doctor's words, and when those words are not encouraging (nor accurate)....

    Anyhow, congrats on the upcoming arrival of Bennett, I look forward to reading more!

  8. Hi! I found your blog tonight on Laurie's blog (Dylan's mom).

    My name is Angela and I have a son with Down syndrome. (LOL--sounds like a support group...well, I suppose in a way, it is.) We were right where you were in December but we opted not to do the amnio b/c the level II ultrasound came back perfectly normal. They even said his heart looked great. Umm...yeah. Not.
    But I know that even though I am also a "need-to-know" type of person, I am so glad that I personally didn't find out until his birth.
    He is nine months old and has already had open-heart surgery and intestinal surgery. But he is nothing short of wonderful. And though our lives have taken a turn we never would have chosen, God has proven to be faithful and sovereign.
    Feel free to check out my blog, especially a post I did in October:


  9. Hi Adrienne. Thanks for posting this. It's almost like you read my mind. I didn't have a prenatal diagnosis, but after giving birth, I was given no information, nada, zippo. I learned most of what I now know from the internet, especially babycenter. I too agree that if women just had a little more information about what life truly can be like, maybe they would think twice before terminating. I feel like part of my mission as Lily's mom is to help get the word out that "it's gonna be ok"...just not sure how to do it!

  10. Adrienne...it is like I typed this post directly as you did...this is exactly how I felt as we found out like you did...prenatally and yes the 90% is shocking that terminate...I look at Brayden and always think of all the familes that are missing out! I don't judge anyone either...but I think if there was more literature out there for parents...but I remember feeling so ALONE!
    I agree...Gifts is GREAT! Brayden's story written by his Grandpa is going to be in the upcoming Vol.II...and we just were notified that his picture is up for consideration for the COVER! So excited...you have to read that book definatley. The second volume will have about 300 stories written from grandparents, siblings, teachers, physicians...etc....the first volume is written by mothers only...
    I am currently on a committee for our local DS society and we are working on prenatal literature and a way to reach out to professionals. I am glad to find out the info from Bethany with Changing LIves...I am going to have to check that out. I have to speak at two different colleges next week as a guest speaker on Down syndrome...I am just praying I can say all the right things...this is to educators that are seeking Special Education, so their heart is already in the right place...I am so nervous though.

  11. There was/is a bill - I don't know if it was ever made into law - but it is regarding this very issue. You can view the bill here: http://www.rhtp.org/documents/InfoSheetBrownbackKennedyLegislation.pdf

  12. I followed your blog over from Bethany's blog and I just wanted to send you a HUG from one mama of a child with DS to another! You are so brave and I'm so glad you've written those things! It's not easy, but man is it worth every single heartbreak, look, sigh, etc...I'm so in love with my little boy, and it sounds like you are too...Keep smiling! :)

  13. I found you through Days with Dylan. I have an 18 month old little angel with an extra chromosome. I was prenatally diagnosed as well and given no information either. There are programs sprouting up all over in local DS associations. I am part of the one in Central Texas. We are VERY active in getting the message out to OBGYN's and genetic specailists. I am the New Parent Coordinator and I go meet with new parents and expectant parents and basically welcome them to the DS community and answer questions and tell them about what our DS community is like. It's kind of like a welcome wagon and a counselor wrapped into one. Lisa brought up the Kennedy/Brownback law that was implemented over the summer. It states that OB's need to give updated statistics as well as balanced information on life with DS. They are to refer patients to the local DS association. It was just enacted, now there will be a long transition phase until it is actaully implemented. Anyway, there is lots more than this, but I won't clog your blog. Send me an email if you are interested in more info. You can see my personal story on my website www.DownRightFaith.com/weblog under A Mother's Perspective (on the right side).

  14. Ugh! I apparently posted my long comment under my husband's profile... One of the bummers of using the same computer. Okay, so the comment above from Randall is really me, Jeanette

  15. Great post Adrienne! Although we did not have a prenatal dx, I couldn't agree with you more. I am shocked to read that you were not given any information after you received your dx. I am going to check out Bethany's blog now to see what, if anything, I can do to help. Thank you for posting this.

  16. I hope over from Bethany's blog. You have a great blog. Congrats on your soon to be new son! Don't the stats make you sick!

  17. GREAT post!! Those pre-natal diagnosis statistics are so, so sad. My daughter is adopted and there is now a WAITING list for families who are willing and WANTING to adopt a child with Down Syndrome...just as I did! Congrats on your new little boy!!

  18. I agree, the statistics on the abortion rate is very disturbing!! It's so sad. When I hear those statistics, I look at my brother and think "how could anyone not want a baby like him!?" It's so incredibly sad. The doctors really need to give more information to the parents so that they know there is hope!

    Thought I'd mention this message board to you - it's a pro-life down syndrome forum and it's a great board :). You have to be approved my the admin before you can view the all the forums - http://downsyndromejourney.forumotion.com/


  19. What a great post! My story is like Cathy's. We found out after my daughter was born and received next to no information. Please let me know if I can ever be of any assistance. Congratulations on the impending birth of your baby boy!

  20. Fantastic and relevant post! I would love to learn more about creating something up-to-date for our community as well. The outdated photocopies we received while I was pregnant and then later in the hospital were not only useful, they made it seem as though getting to know about our new son wasn't important or relevant enough for a nicely published and current brochure. Let me know how I can help!


  21. I SO agree with you! We did not find out until after I gave birth, but still no information was given to me at the hospital or by any doctors. I turned to the internet. The medical stuff was outdated and scary. Then I found the message boards and blogs. What a difference that made for me. I do know of one mom that gives business cards to OBGYN and pediatric offices with her email and website so mothers receiving the news can contact her.
    Oh, btw, we haven't been to any ECU football games since the baby was so little. My girls were ball kids for the basketball games so we have been to quite a few of those this year. We only live about 15-20 minutes from the stadium. Let me know if you ever come back this way!

  22. Thank you for sharing your story! I found you through Bethany's blog. I have a 4 year old son with DS...he is the light of our family and makes me laugh out loud everyday! I love him fiercely! You will be so blessed! We didn't know our son had DS until after birth. Although I know the grieving process is normal and necessary, I wish so much that I could get back those first few weeks of his life to "do over". I just wish I could have known then what I know now, and it wouldn't have been so scary and overwhelming. We are in the process of adopting a child from China too:) Our blog is www.journeytoourstarfish.blogspot.com if you're interested. Can't wait to follow your journey and see pictures of your son once he's born. Babies with Ds are so darn cute, I just want to squeeze them:) LOL

  23. Sadly it doesn't matter how many wonderful books and leaflets there are out there for parents who get a pre-natal diagnosis if the medical profession don't use them.

    People go on about informed choice, but it can only be 'informed' if parents are given ALL the information they need to make their own informed choice. I find it incredibly frustrating after nearly 19 years involvement with a DS group to still be talking to parents who were given the diagnosis and then left to go find out about DS for themselves.

    We not only need to produce helpful informative literature for families, we need to find a way of making it obligatory for the medics to pass it on to them.

    Penny Green
    Down's Heart Group

  24. I respect your choice and your privacy, but how dare you post a link to the babycenter termination board. Those women may have made different choices for different reasons, you are stepping way out of line by making that public on this blog. Shame on you - show the same respect to others. You also should stay off babycenter if you are just going to disrespect thier privacy and troll for your own agenda to make yourself feel better for you own moral justifiaction. You have a pretty fancy blog, you likely have a nice life, money - you should feel blessed to be able to have the means to support a special needs child, not everyone does.

  25. Yes, I published this nasty little comment because I'm going to defend myself. First off termination for medical reasons is an open board as this is an open blog. I did not site it to make myself feel better or to make those people look bad. I was simply backing up my point about the 90% termination rate because many people don't believe that is the case. I had some of those same thoughts so I'm not judging anyone that actually went through with an abortion. I just wish there was more info. out there to women because many feel they can't handle it on their own or that life will be miserable with a special needs child. If I can prevent someone from possibly going through with a decision that may change their life forever and prevent a lot of pain it seems, than I am going to do it. But that doesn't mean I have hard feelings towards those that do decide to terminate. How on earth am I disprecting others when the boards are totally open for anyone to see?? If they made that decision and choose to post it publically they know anyone can read it. Just like anyone can read this blog.

    Nice to know you think my blog is "fancy". I actually enjoy the whole techy thing behind it all. What does that have to do with how much money I have?? You don't know if I have enough money to support this child. I don't know if I do but I'll deal with it when the time comes. That has nothing to do with anything!!

    Once again, the boards on babycenter are not private! They are open for everyone to see! Unless marked otherwise.

  26. Wow Anonymous ... if you have such big guns to come here and be nasty, why don't you identify yourself?

    I'm pretty sure that posting a link to a public forum is legal. Not sure who deemed you the blog police, but how dare you come here to say "how dare ..."! You clearly have a lot of anger built up about something and I think you are completely missing Adrienne's point here. I think you missed the part where she said that no matter why people terminate, they are still grieving. AND ... she can't help but think that if they had been better informed (because we all know that 9 times out of 10, they are NOT informed well), that maybe things would have turned out differently.

    It is so nice of you to come here and judge Adrienne over how her blog looks ... I actually designed it, so I guess that means I have a lot of money too? C'mon ... you are being so ridiculous. You come here with an argument that Adrienne shouldn't be judging others (as you see it ... I don't see it that way), but you are judging her!

    One other thing ... if someone feels they don't have the "money" to raise a child with special needs, there are PLENTY of families out there willing to adopt these precious children. Why abort when they could have a chance at life? So I'm pretty sure money has nothing to do with the reason they abort, unless they are just greedy and unwilling they let someone who is capable parent their child.

    Adrienne ... don't let anonymous posters like this get to you. Talk about an internet troll.

  27. I too had a prenatal diagnosis. My daughter is hands down the best thing that ever happened to us. She has brought more joy, more love, more meaningful lessons to our families and to us than we could have ever fathomed!

    The termination rate used to haunt me and for several years I talked to pregnant women online who were in the midst of their decisions. In the end it was too damaging to my spirit and my psyche and I left it to them finding my blog and searching for reality themselves as my way to help.

    Just as this lady from the termination board found you, there are many who remain in pain for years and follow our blogs and watch our children grown and live in regret. I have heard from several through the years. Don't let the comments get to you, they live in pain.

    You are choosing life and a joy that you have never experienced before. I vocally express my gratitude to the Lord daily for choosing me to be a part of this incredible experience. I don't know what I did to deserve it, I am not sure why I was chosen to receive this love and happiness from my girl, but I am so very thankful that I was. You will be too, I promise you that!

    HUGS and feel free to email me at any time with any thought... I've been there and promise to support you!

  28. I’m visiting from Bethany’s blog.

    I won’t go into the debate about pro-life pro-choice issues, and I have never visited that board, but I do know that others have mentioned and linked to it. The statistics about abortion and Ds seem to fairly accurate many places, and it saddens me so much to know there are mothers and fathers who never have a chance to know their baby merely because the diagnosis scares them away. The diagnosis itself is not one that is known to be incompatible with life. It is the most common genetic variation with approximately 1 in 700 live births.

    Often physicians and geneticists do not give the news of such a diagnosis with gleaming reviews. Although, I believe there has been some growth in the past few years by way of the efforts of books like Common Threads, Gifts, Roadmap to Holland, Windows Into Heaven, and other smaller book efforts by large Ds organizations. Then there are amazing physicians like Dr. Brian Skotko (http://www.brianskotko.com/) who has devoted time and efforts to improving the experience.


    NDSC resources:

    I am the mother of an almost five year old daughter who has a little bit of something extra by way of that 21st chromosome. I refrained from prenatal testing, not because I was against it, I preferred to have a midwife visit me at home, and delivered by water birth. I am also the chapter 4 author in Gifts. My story is "Belonging". When my daughter was born there was little positive information or any information at all provided to me initially. It wasn't until I found blogger and some of my amazing blogging friends, and local Ds groups that I learned more about what to expect. I'm thankful for the internet, and all the people I have met along this journey.

    Things were difficult that first year after her birth. This may even be a bit of an understatement. It wasn't her diagnosis of that fabulous extra chromosome that brought me worry. Rather, it was all the health issues she faced. She struggled so much in the beginning but things are better now.

    Realistically while children with Ds are more likely to face certain health challenges than so-called typical children, no one really knows in advance outside of heart defects (that are often very successfully corrected) what health issues a child may have. I know several children that are as healthy as their siblings, facing no health challenges at all.

    Now I as sit her typing looking to the right I can see her sweet sleeping face, skin as smooth as silk, that kissable sweet little girl skin, just as peaceful as anyone could be asleep. She likes baby dolls, roller skates, running, jumping, and she is a firecracker. She is a girl of few words, but she is such an amazing little girl. I can't imagine life without her. I'm not taking any stance on choices. I'm just going to say that I'm as thankful for her today as I was the first time that I heard her heartbeat.

    Yes, having a child with Down syndrome creates some additional life planning, scheduling of early intervention, and more trips to the physician. Yet, life is full of challenges for everyone, no one can predict what the coming days will bring. Families are faced with other life changing and challenging events each and every day. I have yet to meet a mother or father of a child with Ds that expressed regret in being his or her mother. We all have good days, bad days, and all those in between. The joys are joyful, sometimes even more joyful than with so-called typical children. I realize that there are things my daughter may never be able to do. Yet, I won't measure the quality of her life by this.

    Her value in my life, in our family, in her world is immeasurable.

  29. I think you've made a very compelling argument and really there is nothing I can add. (But that's never stopped me before, so why stop now!) I have a daughter who just turned 4 with Down syndrome. She is my third daughter. I did not have the prenatal testing with any of my pregnancies. Even with the last and I was 35. Unlike you, I didn't want to know and worry about something I couldn't change. It was better for me to know when I could hold her in my arms. I've learned everyone is different on this and respect their decision. My doctor did not push it. I was lucky. I've heard stories of doctors that push the test and termination at women when they get the diagnosis without giving any information like you mention. Our local guild speaks with doctors and hospitals about how they present both pre and post natally. They have brochures and pamphlets they hand out. They are very active in educating families. That is what the Kennedy-Brownback bill is about, too. We are getting there, but we have a long way to go.

    As for your anonymous commentor, I think you handled that with grace and respect and I'll leave it at that. But, she did get me here because I got an e-mail stating you needed our support.

    Congratulations on your upcoming addition to the family. You are in for a wonderful journey.

  30. renee_bordner@yahoo.comFebruary 13, 2009 at 12:20 AM

    Adrienne, I think your friends on here & outside of here are a terrific support network. The anonymous blogger has a lot of his or her own issues to deal with! You handled it well! I love your "fancy blog" and the blog you have graciously helped me with. Your good karma will return to you very soon! Enjoy the long weekend with your family! Enjoy your Valentine's Day! Let's get together next week!

  31. My name is Anne and I have three children, the oldest of whom has Down syndrome. He was diagnosed prenatally by an amnio precipitated by the discovery of several congenital defects.

    Now my son, Archie, is five years olds now and incredibly healthy. He's engaged in life, observant of the world around him, and always has something to say about everything. He's the light of my life, and his father and younger siblings adore him as much as I do.

    You can visit us online at http://www.archiesroom.com, and I write to a blog there. Good luck and I'll be pulling for you.

  32. I also found out pre-natally through an amniocentesis only because I wanted to know and I wanted to be prepared. Termination was never mentioned from my ob/gyn. I was given more information than I knew existed. The genetist was more than "shocked" that I was keeping the baby; she is the one who went on over and over and over about the health concerns.

    And I was a single mother at the time.

    Aiden is now 29 months old. He does have the heart issues and is preparing for his second heart surgery. But he is a happy little boy who loves life.

    Congratulations on your journey. You are going to meet a lot of very wonderful families along your way.

    As far as the anonymous commentor goes - yes, children with special needs tend to require more doctor appointments, but they do not cost more in raising. Children with Down syndrome are born into every social class, race, religion, and country known in this world. Down syndrome does not discriminate.

  33. First I want to say congratulations! I am mom to Nash, almost 8, and Ch 8 in the GIFTS book. I won't join a pro-choice/pro-life discussion, as it never proves productive. However, education about our children always is. One reason I am so thrilled that we were able to contribute to GIFTS is that it provides that necessary education, both to prenatally diagnosed parents and to those with new babies with Ds. GIFTS helps bust the stereotypes, and misinformation about Ds. Just as anonymous shows us, there is a lot of ignorance about our children out there. Nash does not cost us a dime more than a "typical" child would have. No, he doesn't have health issues, and agreed some children with Ds do. But if a couple can't fathom having any unexpected expenses or issues with any child, they aren't ready to be a parent, period.

    I am sending another mom your way, due in April. again congrats and I will be following your journey.

  34. Well...I'm just a little offended for you Adrienne that some "Anonymous" person came on here to bash you and the statistics that you posted. Yes, the pregnancy boards are hard to read, but, you more than anyone have the right to be there. 1. you are pregnant and 2. you are pregnant with a child with DS. So, my dear "anonymous" basher she has EVERY right to be there, troll there, speak about what she's seen there...and you do know "anonymous" that it is a PUBLIC board and ANYONE can see what they type and what it is they feel. So, leave the girl alone, let her blog how SHE feels as it is her blog. And please with your ignorant mind, don't come back! Seriously...

  35. Hì there , I just wanted to say that as wonderful as it is to have a child with Down's ( my son is 9 ) it often brings with it "individuals" who feel the need to comment and judge and seem to think they know better than us about our kids etc. So called "experts" and just regular "ignorant individuals ", we get all kinds!! LOL Looks like your are well able to deal with it good!! Congratulations on your baby boy. Its an amazing journey and its better as it goes on!!
    Catherine and Sam , Ireland

  36. You answered the nasty anonymous commenter very well, Adrienne! I agree with what has already been said, but thought I'd add just once more - Don't let those type of people get to you. I'm sure you'll run into this again. There are plenty of unfortunate people who have not kept their babies with DS and are very adamant and often times nasty in their arguments.

    I have visited that termination for medical reasons board and was sickened, mad & shocked. I couldn't believe how many of those terminations were related to a diagnosis of T21.

    I wrote a blog post about that TfMR board and what happened when I left a nice comment to one poster - http://gotdownsyndrome.blogspot.com/2009/01/abortion.html.


  37. I was linked her from Rebecca. I'm so glad you've chosen life for you little Bennett. I can't imagine what it's like knowing your diagnosis before delivery, but you seem to be taking everything with an open mind. Bravo my friend! It's not an easy thing to hear. As far as 90% terminating their babies w/ Ds, I don't get it either. As other said, you must check out the book Gifts! My story is in there, Lucky. Our daughter is 3 now and such a blessing! She's had a few minor health issues, but she's quite the fighter and we love her more than anything!!!


  38. Just a little encouragement from a mom a bit ahead of you in the journey. Everything will be fine! Your attitude is terrific, and correct. My daughter, Faith is 11 years old. Please read her story http://www.freemethodistchurch.org/Magazine/Articles/Nov-Dec_2007/ND_2007_LifeNote.html
    I also wrote a story about Faith that is in "Chicken Soup for the Soul, Children with Special Needs" called "Good Night, Faith". It is the story of her first sleepover.
    Your son will have a wonderful life, and you will be a wonderful parent!

  39. Adrienne,

    I read your lovely blog, but I didn't have the time to read the comments posted so far. I just wanted to let you know that you are not alone. I am also a "need-to-know" person. I also had amnios with both my children (after two failed pregnancies). My daughter, who is now 8, has Down Syndrome, and my son, who is 6, does not.

    This was probably already said, but DS (Down Syndrome) is not a tragedy; it is not a crisis; it is not the end of the world. You will probably receive a VERY long list of all the medical conditions that may accompany DS. Some people with DS have a lot and some have a few. Nobody has them all. Theresa had a heart defect (corrected surgically at 8 weeks of age). She also wears glasses and has underactive thyroid. My son has a tree-nut allergy and that's more of a pain in the neck than anything else right now!! Have your child receive the medical screenings, but try not to worry about them all being bad news.

    I'm sure a lot of people have reached out to you. There are several Yahoo DS groups that provide online support. You may want to seek a parent's group near you for support. I find it's hard to beat talking to another parent who really understands what you're going through!

    Debbie (NJ)

  40. First comment (before reading the other comments): I agree with you so much; I feel like I could have written myself. (But you said it all so very well.)

    "Has anyone else thought of doing this or has someone started doing this? If so please let me know how I could get involved."

    Yes! In fact, many states have recently enacted legislation about this very thing (providing accurate information to pregnant women) and federal legislation passed just last year. A Harvard medical student whose sister has DS started a big public campaign a few years ago to raise awareness about this issue and it's been very successful.

    Lots of people are also giving copies of Kathryn Soper's GIFTS anthology to their OBs as well, hoping to raise the awareness and allow the books to be passed along to women facing a diagnosis of T21.

    Here's a post I wrote about the decision I made 6 wonderful years ago: http://sarahlynn.blogspot.com/2004/06/choice.html

  41. Adrienne - I found your blog through Bethany. You have a beautiful family! Congratulations on the upcoming arrival of your little one. It will be an amazing journey. We started on our journey almost three years ago when our son Matthew was diagnosed with DS soon after birth. We were faced with so many emotions that many others have also shared but soon realized Matthew was more than a blessing. He has opened our hearts and minds and everyday shows us the beauty of the human soul. I look forward to following your journey. We are both embarking on life as a mommy of 3 - our little girl is due to arrive the beginning of April.


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