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377493 tn?1356502149

Something to think about

Fear of DS and other challenges come up in this forum fairly frequently.  Higher then average odds, thicker then normal NF and other concerns.  It can be terrifying to hear...I know, I have been there too.  I wanted to share with everyone some things I have learned in my time at MH and as a member of this forum.

I didn't start trying to have children until 37.  There were many reasons for that, but they aren't important in terms of this post.  My husband and I knew our risk was higher and at that time in our lives had decided that we were not equipped to deal with a "situation" like that.  I am now ashamed to say we had concluded that if that happened to us, we would probably terminate the pregnancy.  

We got pregnant and lost the baby.  This happened 4 more times before I got pregnant with my son.  During that time I began to spend a whole lot of time here and met some pretty incredible women.  Women that had children with a variety of special needs from DS to autism and everything else imaginable.  I met incredibly strong women like RDH and Trisha whose much loved children became angel babies at 6 or 7 weeks old.  I felt there pain.  I desperatly continued to try to maintain and a pregnancy, and during that time my feelings began to change.  I learned so much from these women.  I learned that a special need is not the worst thing that can happen.  These children still brought their parents so much joy and were no different then the babies born typical.  Even women like RDH who knew in advance that there were problems chose to have their children and fight for them.  By the time I was pregnant with Ryder I knew that there was no way I would terminate, even when I found out we had a much higher then average odds of him having DS.  There was just no way.

DH was still not on board with my change of heart.  When Pertykitty found out her daughter had DS, I began to follow her story very closely.  She has since become one of my closest MH friends.  She shared so much of her daughters story with us....from the end of her pregnancy to the birth and some of the challenges that have followed.  And she has told me time and time again that she would not change a thing.  I fell in love with that little girl.  As we are trying to have another child, I shared her story with DH.  I showed him her pictures and together we researched as best we could what it would mean to have a ds baby.  I am happy to say he is no longer afraid either, and for us, termination is no longer an option.  

We have come to realize that there are no guarantees in life.  Anything can happen at any time.  When I talk to other MH friends whose children had challenges that developed later...women like mum2beagain and another wonderful friend who doesn't really come on this forum, Specialmom, I realize that their children are perfect just the way they are.  I am no longer afraid of anything that may arise with either my son or any future children we may have.  They are all special and they are all perfect.  They all have a purpose and a destiny.  

I am still pro choice.  I do not judge anyone for any decision they make and will always offer any support I can.  I just wanted to post this because so many are afraid.  I was once too.   But having all these strong amazing women share their experiences has changed that for me.  I urge you to educate yourself (as pertykitty always says) and not make a decision out of fear.  You may find what I have...there really isn't anything to be afraid of.  Just something to think about.
34 Responses
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Avatar universal
that is outstanding!! while i dont want my dd to grow up too fast, i cant wait to have stories just like this one (she is almost 7 months old with down syndrome)!!  what a great joy she must be in the family :)
Helpful - 0
1473300 tn?1397588529
I am glad to see this post and all the positive comments. I know there is a higher risk of ds after age 35 but if I am lucky enough to get pregnant, terminating the pregnancy would not be an option for me. My cousin gave birth to a daughter with ds when she was in her mid 20s and her daughter is an absolute joy. Last year she started high school, attended her homecoming dance and even made the cheerleading squad. Being so young my cousin was never offered any testing and I know if she could go back she woudn't change a thing. Her daughter with ds is just as much a blessing in her life as her 2 other children.
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480331 tn?1310403529
Hi everyone!  I'm probably one of the oldest on the forum that has had kids.  I had one at 43 and the other at 45, I am 47 now.  

I will be the first to admit, I was scared to death of having children at my age.  I had to do alot of research and asking to find the risks involved.  Once I knew there were prenatal tests to detect any abnormalities, I took a step back and thought...well if there's a risk to having these tests done, no matter how slight, why would I risk losing my baby to a diagnostic test?  It was then that I really did alot of thinking, praying and talking with my husband...I think most of you would agree with me in saying that no parent hopes to have a child born with a defect, abnormality, disease or complication...but at some point you have to just surrender, and let go and let God.  That's what I did, and by that mindset and faith, I was blessed with 2 beautiful and healthy children.  If I in fact we did have children with special needs, I would be just as accepting and loving...a child is a child.  Some women are in absolute fear of having a special needs child, for them I ask...are you scared, ashamed or just embarrassed?  If so, they may want to reconsider having a child from the get go.  God bless all, and Happy Holidays!

Helpful - 0
Avatar universal
i still check to see if you post a bfp, i pray you do!  you know it does take time away from the other kids, but any baby will.  i have to say that my kids were used to living such a get up and go lifestyle but they love macy so much and accept how things have changed a bit.  i hope to hear good news from you soon!
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667409 tn?1309152183
Interesting you should post this now. Brandon and I have talked more about trying again - mainly his still-hesitant attitude toward it. And one of his fears is that, because of my age, the baby would have DS. His fear is because, when we were pregnant last time, we both agreed that we would terminate if we found out the baby had DS. We agreed that it wasn't fair to the children we already have, as it would no doubt take away from our ability to parent them the way we already did. However, Brandon knows - and I don't think even *I* realized this until he said it - that, after losing Ian, I would NEVER NEVER terminate a pregnancy. Even if the baby had DS. I would accept what God - or whoever is in charge - gives me. Just as I was forced to accept Ian being taken from me. So now, my husband and I are trying to agree on a plan. At this point, we aren't actively trying to get pregnant. But we're not trying NOT to. I honestly don't think I *can* get pregnant - it's been 10 months almost since my surgery and it hasn't happened yet. But, I'm getting closer to just accepting that whatever will happen will happen - regardless of my own wishes. Anyway...interesting thread here, Amanda. :-)

Tricia
Helpful - 0
Avatar universal
Pum
I have been thinking about this topic for a few days. My sister is intellectually disabled (very similar to a person with high needs ds) so for me the decision whether I would terminate if I found I was carrying a child with ds is very complicated (it is complicated for everyone I know but I think I know pretty well what might be involved). I will be responsible for my sister when my parents die and there are issues regularly (health, care, abuse; financial and others over the years).Your views are wise Amanda (and others) and I will say that it is really nice to read all the positive comments about ds here. It isn't what you feel in the community sometimes when you're out and about with a disabled adult.

To tell the truth I wouldn't have an amnio unless I was prepared to terminate. If I am lucky enought to get pregnant again I don't know what I will do.
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Avatar universal
you are far from selfish, you are so unselfish it is wonderful!  

as far as testing goes, im very glad i had the testing i did and this is why :  i was able to greive and educate myself so that when the day came for macy to enter this world her birth was a joyous and wonderful experience.  we also knew about certain health issues before so the dr's could have all the info ready to take the best possible care of her.  im not knocking those that dont test, im just saying for my family it was worked best :)
Helpful - 0
Avatar universal
you know having down syndrome doesnt make a person necessarily automatic in the world of surgery, pain, discomfort.  this statement couldnt be more false.  that is why i say to educate yourselves.

people with ds can do most things anyone else can.  they can learn, go to school (many are in regular classes), dance, swim and do sports, some even marry and have children.  my daughter did have open heart surgery.  it was harder on us than it was on her.  sure she endured a major surgery, but still having her here is worth more than you can imagine.  

having a child with down syndrome isnt a life sentance.  sure they require more dr appts, physical therapy, maybe occupational ther. or speech, but they are no different than you or me.  that is the sad stigma that people dont understand.  sure there are levels of wht they can do or not do, i wont know about macy till she is a bit older but she is a happy and normal baby.  she laughs, cries, eats, poops and loves to play with us.  

i dont have much knowledge on testing prenatally but i have much info on after they are born.  besides the things i said before, they are just babies.  all the info and numbers, blah blah blah dont mean a thing when it comes down to this: all babies have needs and require love.  some people may not be able to handle the extra work in their minds, but you would be suprised what you are capable of!  

there are so many people that want to adopt a child with down syndrome or other needs, i myself would in a heartbeat if i had the space and time and money.  

there is just one thing that bugs me and that is the theory that they cant do this or that.  

if anyone reads this and is unsure msg me privatly (my comp is going crazy and not letting me type some letters!) and without judgement i will answer your questions and help you to find out the facts so you can make a decision with the real answers.  i hope everyone can realize that you can have an opinion and its ok, just lets keep the anger down and talk about it like adults.  
Helpful - 0
377493 tn?1356502149
Well, as much as it doesn't frighten me to have one now (after all, I have no idea what the future holds with Ryder or any other children I may have, so no point in being afraid) I cannot say that I would seek one out.  Maybe that makes me selfish, I don't know.  But I am not certain I would intentionally go out and adopt a special needs child.  I admire people that do a great deal, but I am not sure if we would.  Just being honest.
Helpful - 0
1068361 tn?1290628159
Wow Adgal your lack of fear regarding special needs children is admirable to say the least. I wonder if you have looked into adopting a special needs baby, I'm sure there must be soo many that need good homes and big brothers :)
Helpful - 0
377493 tn?1356502149
I think much depends on when you believe life begins.  Obviously no one can know for certain if there is any pain involved or not.  Some believe in life at conception, others (this is my personal belief) when there is a heartbeat, and modern medicine as well as the law when the fetus is viable outside the womb.  There are even those that believe birth control is wrong as life is in the egg and sperm prior to them meeting.  We all have our own belief system which is why the issue of abortion in general will never truly be settled.  You cannot argue with what someone believes.  We just have to make the choice that is best for us.
Helpful - 0
296076 tn?1371334474
While I understand your point you also do not know what they are enduring during the abortion.  They are in utero so we cannot see their pain.  But an abortion for DS occurs at what 3-4 months?  Do you know if they feel the pain of being aborted and having their life ended?
Helpful - 0
127529 tn?1331840780
I wish we could "like" posts one here. So many of these comments would get my "Like"!
Helpful - 0
Avatar universal
sorry sorry I hit send to soon by accident!!  I did want to thank Ecologic for stating her opinion.  We need more people that aren't afraid to express their choices, their decisions and we don't need anybody to debate that.  No point in debating either way.  You have your choices, your reasons behind your decisions and that's that.  
ok, I will try to make this comment brief.  This subject is so complex and there are SO many variables that fall in to play on why people make their decisions around terminating or not terminating a pregnancy.  Religion....etc....so many.
Although yes, I have concerns about how having a special needs child (like ds) would impact our lives and the struggles.......BUT MUCH MORE IMPORTANTLY FOR ME - is how it impacts that child's life.  How can I bring a child in to the world ALREADY KNOWING before they are born that they will have to deal with SO many challenges, probably painful procedures, countless things that make their life so much more hurtful and challenging.  That makes me SOOOOOOO sad. When thinking about what decision I would make - I put my own feelings aside and wonder why I would choose to do that to a child.  They aren't able to tell us what they would want.  
Let me say that if I did not know ahead of time and I had a special needs - OF COURSE NO DOUBT WHAT SO EVER NOT EVEN A THOUGHT IN MY HEAD that I would do everything in my power to give my child the absolute best life full of love, possibilites, opportunities.  But if I knew ahead of time - how can I NOT think about what is best for that child entering in to this world.  I'm more referring to the pain and suffering they might have to endure.  Because can we really ever know what they are enduring inside?
Ok, this was not so brief ;)
JUST MY OPINION!!!
Helpful - 0
377493 tn?1356502149
I fully agree.  I just believe that knowledge is power and the more information and actual facts we have, the easier it is to make the decision best for us, and for our families.

There are so many things to learn about.  What types of resources would be available to me.  What type of support systems.  What will happen to the child after I and my partner are gone.  Can I handle this emotionally?  Can my family?  They are all legitimate questions.  Once the information has been gathered, that is the time to make the decision right for you.

It hurts me a bit that those choosing to terminate don't feel welcome here.  I hope that changes, and I do think it has gotten much better.  We don't have to agree all the time, and we don't have to offer support to someone making a decision we feel strongly is wrong.  I just don't think we should beat up on them.  In my experience with this forum and in my real life, those that have made the decision to terminate have not taken it lightly.  It is hard to understand, but it is still a very painful decision and action for them.  I just strongly feel that this forum should be a safe place for everyone, whether we agree with their decision or not.  

I am so glad this thread has stayed respectful.  I think that is great!  I know many have very very strong opinions on this topic, and it's nice to see people chiming in without making others feel badly.  

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Avatar universal
ok, I'm chiming in here - first off I wanted to say thank you to Ecologic
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127529 tn?1331840780
*TEARS*

This is such a good thread.

I think most of you know my situation but I'd like to share a little about my sister.

I have one sister, my husband has one brother and they are actually married to each other so whilst we live in different countries now, we are very close and our children are double first cousins. A few years ago we took a holiday with them and at the time just our two boys. My sister and brother in law love both my kids and are great with them but at the time my brother in law said he  knew he would really, really struggle to raise a child with special needs.
When my sister was pregnant they said that they would terminate if they knew they were having a child with disabilities. They are the kind of people who really needed to be in control of everything in their lives and the uncertainty and unknown of having a pregnancy and a child with special needs was something they felt they couldn't deal with. For me personally, that was a little hard to hear but I fully respected their choice. I am not sure I could have "supported' them with that choice but I did respect them. As it was it never came to that.

I don't know for sure but now they have their daughter I think that their opinions may have changed a little, they seem to have realized that no one can control everything and  that no one is perfect. Also when you have not actually had any children or suffered any losses I think that although never easy, the emotions involved in the thought process in making the decision whether to keep or terminate are quite different to when you already have living children, or have suffered multiple pregnancy losses.

Being pregnant with a child you know is going to have special needs must be hard.
From experience I know that living with a special needs child is really tough at times.
There are people who just could not cope with a special needs pregnancy or a special needs child. Termination is hardly the easy option but I do believe in some cases that sometimes the choice needs to be there for a woman who's physical or mental health could just not deal with a special needs pregnancy.
Helpful - 0
Avatar universal
I believe you can be educated and terrified at the same time, yet agree get all the facts you can before deciding. I wouldn't be where I am today if I hadn't - but hey I'm still scared to death where I will end up. It's an individual choice and no one knows you better than yourself.
How fantastic that there is at lease somewhere we can go so we don't all feel so alone.
Helpful - 0
1035252 tn?1427227833
I won't make any personal comments but I truly wanted to commend you ladies on a thread full of mature, well-thought-out and respectful comments. I truly wish I could start a dialogue like this in the 18-34 forum but I think we're all a bit hot-blooded over there about the "hot topics"....so I won't stir the ant's nest. I will, however, send ladies with questions regarding these issues over to this thread to hopefully learn a little something from a very well handled discussion. I promise I won't send over any argument starters though, lol.

Thanks for the resource ladies!
Helpful - 0
363110 tn?1340920419
as you know, I have a son with down syndrome and he also inherited a gene deletion on the 12th chromosome that causes our skin disorder.

I've talked alot to both of you ladies, Pertykitty I remember you asking me about some of the tests and stuff you've had.

Ladies with DS worries should message Dragon1973, her name is Sandi and she is the leader of the Down Syndrome board. She had alot of resources for therapies and things after baby is born.
I do better with the prenatal testing, NT scores, Amnios, CVS, etc.

Good luck, and remember we are all here to support eachother if we agree with eachother or if we don't. I don't agree with abortion, but don't try to judge those who have made that choice. that isn't my place.  PAN me anytime :) I'm also on FB

TTYL
Cindie
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377493 tn?1356502149
I have to say that even though it would not be my choice, I am grateful to live in a country where it is legal and safe.

I hope this does not turn into a debate on abortion.  Truly the purpose of this post was to help women that are scared about test results, or what it may mean to be pregnant at an "advanced maternal age". I have heard stories that everyone from Dr.'s to family members and friends tell us older moms that scare the wits out of us.  As I said above, I seem to get so many pm's and read so many posts from women who are terrified.  So I say educate yourself.  I have met women here and in real life who have chosen termination.  Some were well informed and felt strongly it was the right decision for them.  But I have also talked to those who were basing there decision on fear and what others thought they should do.  No one should be in that position.  

We may not always agree with each others choices, and I know this subject brings out strong feelings.  That's to be expected, and we are all entitled to our own feelings on the subject.  I just wanted to share my personal experience, and how hearing others stories and the sharing of information has changed my personal perspective.  No matter what the future holds I am no longer afraid, and that is powerful.  At least it is for me.
Helpful - 0
296076 tn?1371334474
My husband is from south america where abortion is illegal and he could not understand why we should even do the test as abortion never even ran through his head.  He could not believe that we allowed abortion because a baby may not be perfect... imagine his heart when he found out here you can even abort a perfect, healthy child...  even at 5 months as a gal said on here the other day,  sad...
Helpful - 0
419158 tn?1316571604
What a beautiful post Amanda!! It brought me to tears!! Thta happens alot lately, lol!!
While I would never abort because of DS or any reason we had that scare with our Taylor. I was so proud and happy with DH for not wanting to go through with the amnio because to him it didnt matter:) She was already loved more than any child could ever be:) I totally understand how these great woman at MH can change our point of views on somethings. So many great mamas here!!
Helpful - 0
764229 tn?1322519884
I Have adopted 5 specials needs children and am thankful everyday that their Mom's chose to give them up for adoption instead of abort. I can not even think about a life without these wondeful children in it!!! It is very hard at times but always worth it! I know it may not be the choice everyone can make,but again thank God that these women did,
Helpful - 0
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