Trisomy 21

57 Replies
dionne smith - December 28

i just lot my baby girl on friday, she was 5 months old it didnt matter she was downs syndrome that was never an option, she had two major heart operations and still managed to smile, i have three other children who have fell to pieces because of her death. They are all fit and well and i was only 31 when i gave birth to her! What i am trying to say if you think you can cope with all the heartache that comes with having a child with downs syndrome then go ahead with the pregnancy because in the short time my baby was here she gave us so much happiness.


Ana - December 29

Have an amnio to know for sure. Downs babies are very sweet and loving. If there are no life threatning problems, keep the baby.


What about the future? - January 2

Ana... I agree that DS BABIES are cute, cuddly, sweet, etc... Have you ever tried to pick up and cuddle a DS grown man who out weighs you by 80 lbs? While it's adorable to hold, feed, rock, diaper a baby with health problems; it loses its cuteness when you have to diaper that same grown up. Many people make their decisions based on what the future has in store. It's simple math that shows your children will likely outlive you and that often means that someone else will have to help take care of your son or daughter. I understand that some DS people are high functioning and can hold jobs and live in apartments, but there are an equal number that can never provide for themselves and will always need a__sistance with lifes most basic needs. We based our decision on that thought. While, I'm sure, my older children would have loved a younger DS sibling and probably would not have given much thought to the DS while they were growing up. How would those same siblings feel when they were put in the position of needing to have their DS sibling live with them? Would they have been in the position to take on the care of a completely dependent adult while they were trying to raise their own kids, start their own careers? It's a gut wrenching decision and very few people see it in shades of gray. Another comment to the post from "Christine" who wrote "It is far better to love and lose than to never love at all." What makes you think that we don't all love the baby's we are making these decisions about? Am I only capable of showing love by allowing my baby to suffer through his or her life? Pretty callous comment in my opinion.


newmom - January 11

I wonder if anyone can help me out...I am 24 years old and in my 15th week of my first pregnancy. I had my "maternal serum screen" done last week. I thought it was too early to do it, but due to some other genetic issues, the genetic councillor suggested I have it done. I got a call yesterday that there is a 1/87 chance of DS in my baby. That is high for someone my age, but they said it may be because I was tested too early. I am going for a date determining ultrasound in a couple of days, but I am scared as hell. I don't know if I would be prepared to raise a child with DS, but after experiencing the joys of pregnancy, I don't think I would be able to terminate. Not to offend anyone who has a DS child, but I am really hoping that they tested me too soon and that my baby will be healthy. I guess I am just looking for people that were high risk, but ended up with a flase positive and a healthy baby...curious what my chances are.


Toni - January 11

newmom, when I had my 1st trimester screening I was given 1/16 chance of DS! This too was considered high odds for my age (36). Because I was so scared, I had a CVS test done that showed it was a false positive. I am now into my 18th week and everything seems to be progressing normally. I found that you get a totally different perspective if you turn the ratio you are given into a percentage. Look at it this way...based upon your odds of 1/87, you have a better than 98% chance that nothing is wrong (and LESS than 2% chance of DS)! Hope this helps. Let us know how it goes.


Suzanne - January 11

I am 23 weeks pregnant. We decided to have an amnio and if the results were bad, we would terminate. My results were fine but if not, we would have terminated. I grew up next door to a DS boy and he was sweet but as he got older he was hard for his parents to control. Do what you think is best for your family.


Sheila - January 11

Newmom: I am 40 years old and had a positive AFP for Downs, 1:64 chance and also a positive 1st trimester screening for Down's Syndrome. Needless to say, I was scared to death for weeks until I had an amnio which came back normal. Too many false positives with the AFP, so hang in here and I wish you the best. I have read 100's of postings on various sites and 99% of the time the babies have been normal.


over 40 and pregnant - January 17

now for all, a message from a person WITH down's syndrome, i can understand peoples different views, the one i have trouble coping with is "it is right for the baby".... like killing grandad because he has arthritiis... would be best if he doesn't suffer... i think "it is right for the rest of the family and have to put previous childrens needs first" may be appropriate and perhaps a reasonable measure to terminate, but never justify this decision by saying you are doing the "right thing for a baby" by scattering their ashes... anyway a young lady with downs syndrome wrote this: What Is Down Syndrome For Me? I went to normal schools (whatever they are), and I was in the regular cla__ses. I liked my schools and I liked my teachers. I found the work hard, but Mum helped me with my homework and my reading. They have always said that people with Down syndrome would not learn very much. When I was eleven, in Year 5, my teacher wrote in my school report: "We should not expect too much of Ruth". But I wanted to show people that they are wrong about me having Down syndrome. Inside me, I had the feeling that I can do things. But then I had to change schools as there was no help for me in the senior school. In my new school I did some cla__ses with the other students and also did special education. I wanted to learn to type, but the teacher said learning to type was too hard for me. But I did it, and kept on trying. So what was it like being a person with Down syndrome at school? I didn’t have many friends in senior school, and sometimes I felt "outside". At lunchtime, I used to go to the school library and read books. When people were mean to me, I just walked away. And when some people were not interested in me, I felt left out. I felt lonely then. They were not friends of mine. And some people stared at me, and sort of pointed at me, and I found that rude. But I wanted to keep learning so after I left school I enrolled at a word processing course. This is what happened! The teacher called my name out in front of the whole cla__s and asked me if I could type. She thought because I had Down syndrome that I had no keyboard skills! But I did not understand all the work and I asked for help, and that upset the teacher. And then the other students said they needed help too! They all thanked me for standing up to her. And I pa__sed the course. Having Down syndrome means it is harder to get a job. And when they do offer jobs they are not suitable, like the job at the airport, which was shift work starting at 7.00 in the morning and the last shift ending at midnight! And then I would have to get home. How would I do it? But I had two office jobs, and I was the relief switchboard operator, but those jobs finished. This is great news! And I have been waiting a long time for this! I am now employed in a permanent part time job as a clerk with the St George Bank in their Head Office. This is a good job. I like doing the work, and I like the people there and I have made friends in the workplace. When I wear the uniform I feel business-like. I am part of the St George team. I fit in. I always wanted to be an actor and I have done it! I started doing drama cla__ses when I was eleven years old. I never thought I would be an actor on TV, but I was asked to be in " A Country Practice" in a guest role. Then I got another job. I got a part in a play on the stage. How did I get involved in it? Well, I auditioned and I got in. The play was called "A More Fortunate Life" which is about two people who have a disability, and how they cope with it. The five of us, including the director, did the writing of the script from the workshops we did. We took it to the Adelaide Fringe Festival and toured New South Wales country towns, playing in schools and theatres. It was a full time job and I loved it. Then I auditioned and got a role in the TV series "House Gang", a comedy series about three people who live in a group home which was shown in Australia on SBS and also went international: it was shown in the United Kingdom and Sweden. I loved playing the role of Belinda because she was very romantic! We made a second series in 1998 with the support of Channel Four in the United Kingdom. The actual job was this: it took twelve weeks to film. I knew this work would take all my commitment. I was very honest with myself because I knew the filming would start very early and finish late. It was strenuous. As an actor you’re not supposed to think of other people but yourself and the other person that you are working with. You have to make it happen for them as well as you. Team work. Acting is a hard job but I love it! People always ask me how do I learn my lines? Do I have to have help? Well, I don’t. I learn all of my lines by myself and I keep at it. I also know the whole script. I never miss a cue. I do my job, and I work very hard. I am always ready on time, and I am very well organised. One of the videos I made is called "Talk About It". It is about s_xual a__sault. The aim of this video is to teach people that you have rights and you can ask for help. The Chicago International Film Festival in 1997 honoured the four of us who acted in it with an Award for Talent. So as an actor who happens to have Down syndrome, I have been able to get lots of work. I have done videos promoting rights at work and in the community, and I have performed at launches and promotions. As an actor I hope to encourage people with Down syndrome to get out in the world and do things. I want to show people through my acting that they can have a life like anyone else. I would like to say to people out there with Down syndrome to just carry on. Don’t let it worry you. Just do your best! What Down syndrome means to me is that I can have a life just like anybody else. And I have made a life for myself. I represent people with disabilities on three committees. I am a member of the management committee of the Down Syndrome a__sociation of New South Wales. I like to contribute to the community, to help people and be useful. So I do volunteer work. I am often asked to give talks to community groups, university students, and schools, mostly high school students, and that’s important because they should know about us people with Down syndrome! Over the last four years I have spoken to over thirty schools. I also work as a volunteer at Mary MacKillop Place in North Sydney in the coffee shop. I swim every Sunday with the Bondi Mermaids in the ocean pool right through winter. And now I have joined the Bondi Icebergs. It’s cool! My brother Michael is also cool. Nanna is dead now but I still love her. We had the best times together. Friends are for the good times and the bad times. That’s what friends are for! Friends are on your side for ever more and they won’t let you go. Some of my friends have Down syndrome and some do not. I have special close friends and I ring them up and talk about things like the family, work, the weekend, and we try to go out with each other to the movies or go out to lunch. When their birthdays come I send them a card and ring them up on the day because it makes it special for them. But there are things that I cannot do. Michael stays out overnight. Why can’t I? Michael goes away on weekends. Why can’t I? I know why! Because I can’t get there, and I can’t drive the car, and my friends can’t drive either! Now this is the kind of thing that makes me mad! I went to the bank with my mother to open a cheque and key card account because I had a job and I was earning money. The lady in the bank kept on asking mum all the questions, and she didn’t ask me anything! I felt like saying "Hello! I’m over here, lady"! I strongly believe that adults with Down syndrome can have a life! People with Down syndrome need to support each other and now we have our own a__sociation. I am past President of the Future Adult Advisors. We call ourselves the "Up Club" and we are a peer support and self advocacy group. The aim of our group is to help each other and to make new friends, and to make other people aware of us. And we have over one hundred members. What is Down syndrome for me? I do not feel any different. I know it is there, but I do not think about it. I carry on with my life. It is not going to stop me having a flat one day and getting married. I have learnt to be strong and can cope with people who are mean to me. I don’t let it worry me. I feel secure. In a play I did, my final speech is a powerful monologue, it really hits home. And from me, over forty and pregnant, they can stick their amnio's fair up their bums, the miracles of modern science to me (and this is just my opinion) are just like hitlers eugenics to create the 'perfect race'......


SYLVIE - January 17

to the woman with DS, God Bless You! You don't know how refreshing it was to hear your story, and you are absolutely right! I hope to show my unborn DS baby that he too can achieve a lot growing up and whatever he chooses to do, whatever his gift are, I will be right behind him in love and support, you keep up the brilliant work you are doing.


over forty and pregnant :-) - January 23

Sylvie here is the link where Ruths story is, and good luck with your baby.: there are other good stories too, for those that do decide to keep their babies. It is a personal choice but after doing a google image search on 'abortted fetus 20 weeks' i am definately not going the road of genetic testing... and i am WELL over forty. Guess i just wanted to post this not to make people feel bad who decide to terminate, but just to give the other side of the coin, physicians etc do tend to be rather 'pro' testing and terminating and it is good to know everything, the good the bad and the ugly, not just the bad and the ugly. I had a bit of a chuckle at the post where the cute downs boy became difficult to control as he got older... sounds pretty standard really, anyone who has had teenage sons would relate. God bless all whatever decisions they make, just remember, the right choice is an informed choice. A termination may be a right choice for some but for others may just lead to a lifetime of regret and guilt. As for what happens when i die if i have a downs child and he/she is an adult, well he or she will probably end up in a group home, maybe meet someone and fall in love. As one study on the impact of marriage on ds adults one landlady reported to what it was like living with a ds couple upstairs. "They're just like any other married couple except they're happy all the time".


sophiya - January 23

Its not easy for everyone, especially when other memebers of the family have to suffer because of anyone's decision to keep a DS child.


sophiya - January 23

sorry if i sound rude. didnt mean to hurt anyone


Kelly S. - January 23

My heart goes out to you. When I was pregnant with my 2nd, I miscarried at 5 months...still dont know why. Then a month later I became pregnant again. During an ultrasound at 6 months, they discovered my daughter had a kidney that wasn't functioning. The ultrasound tech. actually suggested I abort the baby!!!! And this was in a Catholic hospital!!!!! I chose not to. Terra had to have kidney surgery at 3 months of age and only weighed 13 lbs. The tube that connected the kidney to the bladder was blocked. The surgeon cut the blockage out and re-attached the tube and her kidney has never had another problem. She will be 15yrs old in 5 days! I believe you should follow your intuition and your heart. Doctors aren't as smart as they tink they are!


MelissaK - January 23

I miscarried a trisomy 21 healthy twin at 15 weeks. The Trisomy 21 baby died at 7 weeks.


Jeanette - February 7

i am sorry and i know you want to hear from someone who was in the boat. I think that everyone should be given a chance. no one should put a child down because what they look out because it may not turn out the way the doctor say because god is the one who is doing all the work. if you trust in god then eveything will be ok. beside you was sent this child for a reason from god beacuse he know you will do the right thing. if he know you wasnt going to do the right thing then you wouldnt have second thoughts on it you would have already done it. I see you already have 3 health kids you should not terminate that child because in a long run god is going to bless you, but i cant speak for you all i can tell you that god has brought you a gift that he wants you to have because you will take good of it. just know you will be bless in the long run take care beacuse you would make the right choice and the little one will do alright.


lao - February 7

My third child is DS. she is now 6 months and has been such a blessing in our lives and everyone around us. I wouldn't trade her for anything. No it is hard to think about the struggles she is going to go thru during life and you don't want your kids to have that. But always remember GOD has a plan. You may lose this baby and that would be part of gods plan. Alot of time we don't understand his intentions. We went thru alot of question, why god? Why us? But never did i consider abortion! When i look at her precious face i feel guilty that i had all those emotions when i found out about the DS. She has touched so many lives. She has been thru 2 surgeries. When we were at the hospital after birth, the next day she had surgery for the blockage in her stomache. He she did so good, you look around and some of the babies in the NICU and realize, gosh we are lucky. Some babies live in the hospital etc. GOD chose my family b/c he knew that we could care for his special child. And he is right! I'm so thankful for our little blessing. She is our hero! Good luck. I know you are going thru lots of emotions and that is natural, we are human.



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