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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.
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Avatar universal
WELL SAID AMANDA!!!! :)
Helpful - 0
127124 tn?1326735435
Very well said!  

I have never admitted this before but I'm going to now.   When we tried to have children we discussed the if/buts etc.   I always said I could not handle a child with down syndrome and told my husband we would need to put the baby up for adoption or consider terminating.   My husband was very upset with me for even considering this.   ( I had my reasons for thinking this way but I'm not going to share them)  Anyway it took us 7 years before we conceived.  I had all the tests and everything was perfect.  Our baby arrived small but healthy.  When she turned 3 we decided to try again.  I immediately became pregnant.  We were thrilled.  Within weeks I started having problems with the pregnancy.   My body was attacking the baby.   The Dr's didn't think he would survive.   The pregnancy continued with many more problems and the Dr's weren't sure if he was "normal"   I knew at that point I couldn't/wouldn't consider terminating.  I loved this baby but still didn't think I could handle a special needs child.  I tried to talk about adoption but my husband and family were so upset with me.    My son was born at 37 wks by emergency c-section.  The cord was around his neck twice and his heart stopped.  They rushed him to the NICU.   It was at that moment I realized it didn't matter if he was "normal"   I wanted him to live so I could love him for the rest of my life.     To this day I still feel bad when I think how I could have possibly terminated the pregnancy.   I will never forgive myself.    

When Pertykitty told us her baby had down syndrome all the memories came flooding back and I was once again ashamed of myself.   From the moment she told me about Macy I could feel the love she had for that baby.   Macy brings a smile to my face everytime I see her picture.  

There are so many amazing moms on this forum that have faced challenges that we can only imagine.   I bet they would never change a thing about their children.      
Helpful - 0
377493 tn?1356502149
Sue, that is always the recurrent theme.  I have met women on this forum with children that have such a wide variety of extra challenges.  Every situation is unique. But every single mom, without exception say's the same thing "I wouldn't change them for the world".  That has taught me so much.  

And again, I am absolutely not condemning anyone who has made the decision to terminate.  This forum is intended to be a safe place for everyone whether we all agree or not.  I do not live your life and do not have the right to judge you...besides I am really not wired that way.  I just see so many posts where women are absolutely terrified, but don't have all the facts.  I believe that knowledge is power.  Whatever decision you ultimately make is up to you, but make it an informed one.  Do not be ruled by fear as that is when regret comes in to play.  
Helpful - 0
229760 tn?1291467870
Although I agree with everything you state, I will NEVER support someone who wants an abortion! (and you know this)

I am not going to take over this thread, I promise, I will leave at this!
Helpful - 0
127124 tn?1326735435
I'm not condeming anyone either.   I am pro choice.   You are absolutely right we shouldn't be ruled by fear.    

Another thing:  No child is "perfect"    Many years later my daughter developed issues that we still continue to deal with.    No one ever knows how things will turn out.    
Helpful - 0
377493 tn?1356502149
I know Rachel.  And you are always true to your belief system.  I respect that a great deal.

Sue, you are so very right...my son is only 10 months old.  I have no idea what is waiting around the corner.  I just know that whatever arises, we will deal with it and love him to bits.  Besides...perfect is dull!!!  lol.
Helpful - 0
571099 tn?1308234148
what an increadably beautiful thread..  and I will leave it at that ;-)
Helpful - 0
803938 tn?1403748253
I am sorry to say it but when you have had an abortion and you mention it on Medhelp, there are always people to judge you loudly. Women who have had to terminate their pregnancies do not stay on this forum. This is the last place to turn to for comfort.

I very certainly would have terminated my pregnancy if I had been told my baby had DS for sure. And yes I consider myself informed enough to make this type of hypothetical decision. It's great that some people are strong enough to chose to raise children with disabilities (knowing about them at an early stage in the pregnancy), but personally I would not have made this choice. Now of course if my son were to have a serious disability in the future, I would deal with it and I would keep loving him no matter what. He is here now.

I know my opinion puts me in the minority here - oh well.
Helpful - 0
377493 tn?1356502149
But that is exactly the point. Those that choose to terminate have their reasons.  There was a time I felt the same way.  I just worry about the women that are terror stricken without having all the information.

I think it's getting better in terms of those that make that choice feeling welcome.  I know that I always defend them, and others do too.

The point of this post was not to influence decisions one way or the other.  It was to encourage women who are scared to get the facts, then make their decision.  I will always support those that make that choice and I will also defend them.  I know many others who feel the way I do.  

You making the decision you would is your decision and no one else has the right to tell you what you should do. Your life, your body, your family and your right.  But I cannot tell you how many posts and pm's I have answered from women who are working on pure fear...and much of their info is misguided.  Look how many women come on and havent even had a screen yet, terrified because some one has told them their baby will have all kinds of problems due to their age.

When these posts come up, they used to get very very ugly and heated. Not so much anymore.  Everyone has a right to their opinion, but I have found that it is said in a much more respectful manner now.  I truly hope that continues to be the case.  How this is handled is the right of the women having the child and who will be raising it.  I respect that.  I just want to make sure everyone has the correct info.  
Helpful - 0
Avatar universal
you know i want to add something for anyone that reads this that is dealing with the possibility of ds.  i know i have just gone on and on about macy and how much i love her and accept her as she is.  there are a few things though no matter how much you are able to accept a child that is going to be born with some genetic or health concern is you do have feelings you go through that you might be ashamed of.  

when i was pg with macy i was having testing done. i knew terminating would never be for me but finding out was important.  when i recieved the call that she did in fact have down syndrome i felt like my world went crazy.  i had grief over the child she would never be.  before my amnio i thought "maybe if i have it i will miscarry and not have to deal with it".  after much research and talking to many moms it is a very normal reaction and im not ashamed of how i felt.  

i picked myself up after a day or so of pity party time and learned as much as i could.  talked to people from the local down syndrome group.  learned my emotions were normal and people with ds can do so much.  heck a friend of mine from the ds society has  dd with ds that just got her drivers license!!

i guess what i am trying to add here is i dont want to paint a picture that it was never hard for me to accept.  i went through the emotions and realized that it isnt the "what she wont be able to do" but the "she can do this!" that made me realize that if i had lost that precious angel i would never have experienced a love that is beyond what i could imagine.  sure it has been rough with feeding tubes in the begining and open heart surgery but its all been worth every minute of my time.   :)
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
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
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
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
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
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!
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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
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.
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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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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.  

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
127529 tn?1331840780
I wish we could "like" posts one here. So many of these comments would get my "Like"!
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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
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.
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