Tuesday, 03 November 2009
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No more children like Emily?
A friend of mine whose daughter also has Down syndrome posted this article on her facebook. It is really long, but essentially it discusses the fact that there are fewer children born with Down syndrome today than in the past.
I know we have beaten the whole "would you terminate or not" thing to death, but this just made me sad.
Each person must make the decision that is right for their family and I refuse to judge anyone. However, to think that this world might not know children like Emily because of the continuing out dated information that doctors give to their patients just bugs the hell out of me.
As you all know, I didn't find out about Emily's issues until shortly after her birth. However, the woman that posted this article found out while still pregnant. She said that the pressure she received from the doctor to terminate was unbelievable. This is something I have heard time and time again.
Until the medical profession learns to give complete information to parents facing such issues, more and more terminations will occur based on misinformation. Life does not end with this diagnosis. In our families case, life became so much more enriched.
I don't know, but I would much rather listen to a person that actually has experienced this life than a doctor whom is just speaking from a clinical level. There really needs to be more programs in place that allow parents potentially facing these issues to meet with parents of a child with Down syndrome. Informed decisions are always much better than those made with limited knowledge.
Sorry, but you guys know how I can get. A world without children like Emily is really not a world I would like to imagine. End rant.
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Comments (43)
I didn't check out your friend's page, but I had just read an article about Down syndrome declining because of abortions. It is kind of scary if that is an actual method being used to stamp out 'undesirable' problems.
I just wanted to say that your blog has reiterated my belief that I will keep any child that forms in my uterus. I've talked to my husband in depth, and we both agree that though there will definitely be parts that would be very difficult, the reward will be great. I am a very pro-choice woman, but I'm also a firm believer in that which happens is meant to be, and if my child has Down's Syndrome or anything else...then that is what's supposed to happen for me, and it will be a blessing. Your Emily just seems so darling, and I truly believe it would be a blessing to have a child like her. And I agree, it would be a tragedy if there were no more children like her in the world.
@Paul_Partisan@xanga - It was a really long article, so I don't blame you for not hitting the link. It bothers me on a very personal level, as you can imagine. I just wish that the information given was more current and yes, this is one situation where abortion is used to end "undesirable problems" often by the urging of the doctors.
@whitetrashpoet@xanga - Thank you so much. Emily really is the most amazing child. I realize that everyone has to come to the decisions that are best for their family, but I just wish that there was better information being put out there so informed decisions could be made.
I know your daughter is a beautiful child and it really saddens me to think that people would terminate a pregnancy just because of the extra challenge it takes to raise a special needs child.
@gwacemom - SO true. Honestly, I used to think I would definitely abort a child if I knew there would be a serious problem. But I've done research, and actually had a mentally disabled dog for a while - sounds weird, but it's true. He was difficult, yes, but I experienced a kind of love that I've never experienced from anyone, animal or human. And I think it would be wise to apply what I learned in that situation to future children. Just because someone else says that child (or dog!) doesn't deserve a chance doesn't mean it's true. It just means they'll be the ones missing out on that joy, that love.
@whitetrashpoet@xanga - I couldn't have said it any better. Very true.
I had one ultrasound tech telling me to terminate if Lucy had DS. Horrible. People have no brains. Seriously.
I don't really have anything to add here. I just wanted you to know that I thought this was interesting, and that I stopped by to read.
That is all.
@vanedave@xanga - LOL, welcome to my blog and thanks for stopping by.
@AbsolutelyNormalChaos61308@xanga - I know I tend to beat this subject to death, but each time I read things like this, I just get upset all over again. The pressure to terminate is so strong in situations like this. I know that many communties have programs in place, but my dream is to have them everywhere. At least then the parents are coming from a place of knowledge and not a place of fear.
If I could only figure out how to make it happen.
It's sad to think of. If this ever happens to meI will be finding another doctor ASAP. No one is going to pressure me into terminating my pregnancy.
I think that'd be an awesome program to have--a way of linking local families who deal with birth defects and Downs Syndrome and such. That would be so cool.
~V
while i was pregnant with sammi they said that sammi had down syndrom i wasnt worried i didnt really mind either way because she was still my baby! after they did the amnio they found out she didnt have it but its never made one lil diffence to me if she had it or not i would have loved her the same
Thank you for sharing this. I am saddened by all those chilldren who never had the chance to live, and glad for you and Emily! HUG
@TheMarriedFreshman@xanga - It is something I have been thinking about for some time. I think it would be something worthwhile for all involved.
@they_call_me_steffyjean@xanga - I can't even imagine being in such a vulnerable position. I must say that there are some really great doctors out there that make sure their patients have the necessary information, but I have heard far too often that the parents are only given the downside and feel the pressure to end the pregnancy.
@gwacemom - yeah. It was way overdue.
@Dadosaurus_Rex@xanga - You are so very right. We did not know of Emily's diagnosis prior to her birth, but it would have made no difference. She is the light of our world and of that of her brothers and sisters. We focus on what Emily can do not what she can't do. My life would never be the same if she were not a part of it. Thanks so much for stopping in.
@whitetrashpoet@xanga - That is a great attitude, I totally agree. How can a mother not love her own child? :(
I agree with you 100%. When my god son was born, they gave us little information. They basically told us that he wasnt going to ever be normal and would more than likely be very delayed in his life. They said he would probably have a lot of health issues as he grew older, blah blah blah. Not things that a new mother and father plus their families, wanted to hear. I had research behind me because I knew another wonderful little boy who had DS. I explained to my friend and their families that the doctors were only telling the negatives, and that they couldnt be for certain what kind of delays or health problems Kaden would have. I told them that every child, DS or not, will have some type of problem as they grow up. I knew Kaden would be a normal functioning little boy and my goodness has he proved that. Some doctors are just so against carrying a baby with a disability. All children are special... but the ones with DS hold a very special place in my heart. It hurts me that doctors would even bring up terminating a baby unless the baby and/or mother were at risk!! Very sad. I, as well, could not imagine my life without Mr. Kaden!
@xo_heather_marie_ox@xanga - I have been blessed with the most wonderful pediatrician that sees Emily for the amazing little girl that she is and not just her diagnosis. I can't tell you how many times we have had to see other doctors that focus only on her Down syndrome. It always amuses me because they read her chart and see CHD and then love to tell me how they hear her murmur. She doesn't have one since her repair according to her cardiologist.
I have to say we are glad we didn't know prior to her birth for many reasons not the least the pressure we might have felt. The book that they give you when the diagnosis is made scared the living hookie out of me and this was after Em was here. There were so many things that could be wrong and yet weren't. I even had a nurse tell me in the NICU that there was a waiting list of adoptive parents wanting a child with Down syndrome. So not giving up my Emily, sorry.
Ok, reading this post and through all the comments and everything brought tears to my eyes, though maybe that's the pregnancy hormones :). I just can't even imagine terminating a pregnancy because the doctor says the baby may have something wrong with it. How many times is the doctor wrong?! My aunt was told that my cousin was going to be born with DS and suggested termination. She ended up switching doctors because of that, and then as it turned out, when he was born, no DS, or anything for that matter. He was absolutely fine. I also had some friends that were told their baby was going to have something wrong with her brain, though I can't remember what, and mentioned that it was unfortunate that it was too late in the pregnancy for termination, which upset them that he would even mention that. As it turns out, she is a perfectly healthy, almost 2 year old now! Those are just 2 that I know about, I'm sure there are many more times when the doctors are wrong. And even if they are right, like you have shown all of us, Down Syndrome isn't the end of the world, as a matter of fact, it can be a blessing!
@Luv2BMama@xanga - LOL, we will blame the hormones. I personally know of seven people that were given the potential diagnosis of Down syndrome and it was incorrect. The false positive rates are crazy, but most people do not know this.
Yes, for my family it is an absolute blessing. I am so glad you guys are sharing this journey with me.