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2nd Trimester
Sensitive Subject - Not keeping baby with (certain) disabilities?
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Re: Sensitive Subject - Not keeping baby with (certain) disabilities?
Spenjamins. I am the mother of a child with special needs. He was born 14 weeks early. He was NOT pretty at birth. Even in the haze of hormones and drugs, I knew he looked bad.
I was sad, angry, defeated and terrified. But I am telling you I was NEVER disgusted. I was worried for my son's life. Not about what "people" might think.
Are you calling me a liar?
You want to know how I felt, you're welcome to visit my blog. He was born 5/31. In the hours before he was born, I talk very openly about feeling cheated out of a normal childbirth experience. Those feelings are not pretty. But I'm telling you, I loved my child then, I love my child now and I have never. EVER. EVER. been disgusted with him.
You presume to know the emotions of a special needs parents in all cases? What is your job title again? Psychic? Perhaps God, since you also seem to know who deserves to live and who doesn't.
My Blog
Bam! And there is the truth. I really think that Spenjamins is jaded.
I am definitely lurking but I couldn't help posting a comment.
I am in no place to judge anybody's decision but I'll post my opinion. I'm pro life, 200%. I KNOW I would never abort my baby, that is just something I knowl. It doesn't take me being in the position to know this, there are just some things you do no waver on in life and an innocent baby is one of them. I'm not saying I wouldn't be scared, or terrified, or even furious, but it would still be my baby and I would love him/her unconditionally.
You keep saying, this is a preventable problem and I can't help but question that. How is finding out that your child may have DS preventable? They already have the disability, by choosing to abort the baby doesn't make it go away, it doesn't prevent that .
I guess you make be thinking you are preventing your child from having a more difficult life, but that isn't make sense to me. You have NO idea what the life of your child will be like, disability of no disability.
My gosh, I just read a blog of a little girl that had cancer and suffered terribly in the weeks before her death. THer short little life seems like a very far more difficult life some DS people/children go through.
Another case was a local woman who had a T18 baby. Doctors told her the baby wouldn't make to term and she should abort. She chose not to and her baby lived 5 months, WITHOUT suffering! Her parents were so thankful for that time with their child.
I guess my point is, when did it become our place to decide when children should get to live? I can't help having a religious point of view, so who am I to stop the heart when God has kept it beating?
I promise, I say this without judgement because no one has had the perfect life making the most perfect decisions. Your thoughts (not you) do make me angry because I see a innocent little baby who won't get a chance a life. I just pray (if you are ever in the situation) that you will see your child as exactly what it is, YOUR baby. I hope you can see a perfect baby that was created by you and love him/her just for that.
Bam! And there is the truth. I really think that Spenjamins is jaded.
You are soooooooo not ready to be a mother and I feel sorry for your child. You have no idea what kind of baby you will have or if you will have any complications during birth or after. If you decide to become pregnant you need to be an adult and take what comes with it. What do you plan to do if you have a child with severe autism or who is injured during birth?
I am just so disgusted right now.
What the hell is all the discussion about stages of grief? I might have to recheck my copy of the DSM, but I don't remember disgust being listed.
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and may i ask what you're doing with YOUR life that's so illustrious?
Well said! My daughter was born 14 weeks early as well and it terrified me. I had a hard time bonding with her and was honest that I thought she looked like a little frog. But never once did I look at her and think "Wow! She is disgusting."
ya spenjamin read the blog.
I really think that as a doctor you are giving them a bad name. You honestly do not sound like any doctor I would want caring for me or a family member. You sound like you are full of negativity. As someone who practices medicine & treats those with mental issues you should maybe learn a bit more compassion & sensativity than you have been portaying on here.
Did anyone reply that actually has a special needs child? I didn't read all the replies so Im not sure. First, it is Down syndrome the s isn't capitalized and its not down's. The dr. that descovered it was Dr. Down he doesn't own it, so no s on the end.
When we found out that DD had Ds, we originally were going to terminate. I had an appointment scheduled several hours away at the closest clinic that would still do it at 18+ weeks. 3 days before I was to go in, I changed my mind and I am SO glad I did. A lot of imformation out there is outdated, things are so much better now for Ds children than years ago. Early intervention makes such a difference. The important thing is, it doesn't matter what other children are doing, what will your child be able to do? EI wasn't promoted as much and that is why you see adults that aren't as high functioning, they have the potential but no one did anything with it.
I fully expect my daughter to be able to do what ever she wants in life. No, she won't be president, but I don't think my "typical" boys will be either. After having my DD my views really changed. People are afraid of the unknown and that is what really drives the termination rate up so high for Ds.
I hope none of you have to ever make the choice of keeping your child or not, but know, Ds is not the end of the world, its a club I never wanted to join but I am so happy to be a member of now.
I am as absolutely pro-arbortion as they come so I don't think I would reget any decision about abortion I made. Can I promise that, no. I haven't yet regreted the one I had previously.
I am not judging them. You are. I am validating the very real emotions they experience and normalizing them. You are doing the opposite.
The doctors predicted that I would not be a highly functioning member of society. They thought that due to a pre-term birth, no prenatal care of my birth-mother and poor nutrition up until the state took me away that I would never progress mentally passed the age of 5 or 6. I was taken by the state and my adoptive parents were told by the state physicians to "not expect much".
Fast forward: Mom took us to the GP. He said to do fun things and nuture our education. Everything would be fine. Our mom took us places and did things with us. Exposed us to life and experiences etc. I graduated summa **** (they sensor latin on here?!) laude from high school & college. I am a fully functioning adult.
Sometimes the tests are wrong. I say give every baby a chance. It is a personal decision though and I can only say that I would cross that bridge when I come to it. However, given my own life experience I would be hard pressed to terminate. It would be the hardest decision of my life and I hope that I never, ever have to make that choice.
OP- You are blessed to live in a world where medical intervention is possible and you are able to make the reproductive choices that you deem fit. It is truly a personal decision that I hope that no one on this board (or any board) has to live through.
ETA: They censored the latin. Bump fail.
My aunt and uncle have a "special needs" daughter. This was before the days of being to test for anything. They did not know that anything was "wrong" with her until she was 6 months old and not meeting milestones. She is an absolute joy. Yes, her 28 years have been tough sometimes, and sometime it's more stressful that you would like for it to be, but she is seriously the happiest person I have ever met. She has never been ridiculed for who she is, and her quality of life is determined by her parents, not her condition.
I think that you posted this because you knew it would be controversial, and you were looking for drama, and I think that is really sad.
I think Spenjamins is a quack & anyone who is her patient is being done a major diservice.
It'd be one thing if you were advocating for women to allow themselves to feel their emotions regardless of how taboo they are. Your insistence that all moms of special needs children feel repulsion is ignorant, condescending, and just flat weird. Not all people feel the same things. Some women might experience that, some might not. Stop insisting that everyone feels it otherwise they're in denial or just lying to their friends; you're not them so you do not know what they are thinking or feeling. PERIOD.
I guess spenjamin isn't speaking to me. Probably too scared to look. I do have a photo of my disgusting child in my signature.
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Wow. You are obviously not related to anyone that isn't absolutely perfect in your eyes, right? Just because you are too closed-minded to allow someone with a disability to have an impact on your life doesn't mean the whole world agrees with you.
your comments in this thread have been enormously insightful. an extremely conservative and religious relative of ours had an abortion years ago, because the baby was believed to have a problem (i'm not sure of the exact nature). i don't think anyone really understands what the families of mentally challenged children and adults go through, unless they've had the experience themselves. and i also don't believe anyone knows how they would face the choice if they were confronted with that life.
I'd like to know what my bias is. I'd also like to know why you think that you are so privy to the truth from said parents and others aren't. Why is it you think that as a psych you aren't lied to & only us lay people are? Why is it that people wouldn't confide their innermost taboo feelings to their friends or family? Hmmmm? God complex maybe? Get over yourself. My mother has bipolar & sees a psychiatrist regularly for it & has been known to lie to her all the time. Don't fool YOURself. Just because you are a dr doesn't mean that you have all the answers.
I'd like to know what my bias is. I'd also like to know why you think that you are so privy to the truth from said parents and others aren't. Why is it you think that as a psych you aren't lied to & only us lay people are? Why is it that people wouldn't confide their innermost taboo feelings to their friends or family? Hmmmm? God complex maybe? Get over yourself. My mother has bipolar & sees a psychiatrist regularly for it & has been known to lie to her all the time. Don't fool YOURself. Just because you are a dr doesn't mean that you have all the answers.
I haven't read every single reply to this post... I don't have time to read through 11 pages of the thread. I am a regular on the mc/pgl board... and I just can't not respond to this post. My daughter was born at 34 weeks and weighed about 2lbs 11ounces. We ABSOLUTELY were hoping and praying that she wouldn't have any "problems", that she would have to spend some time in the NICU and then grow into being a beautiful, "normal" child without any developmental delays. Over the course of the following couple of days, we learned that due to her prematurity, she would have SEVERE delays, and require constant care. for the rest of her life. If she lived. No, she didn't have DS, but she had significant brain damage due to a profound bleed in her brain. I want to know, would you resent your child if you had gone through this situation? I would NEVER EVER EVER wish the pain of what we went through on anyone, but I was further along in my pregnancy than you are now, and up until that 34 week appointment, I was pregnant with a baby girl who had absolutely no genetic issues... no problems, nothing. How will you feel if your child has abnormalities at birth that you had no way of knowing about? Will you love your child LESS? My daughter did NOT live. She passed away after being a live for three beautiful days, because of that bleed in her brain. I can honestly say that I would do ANYTHING to change the outcome, to have our daughter with us, even if that meant that she would require care for her entire life.
I know that you are entitled to your own opinions, but I hope you understand how disgusting your comments are to those of us whose children did have something wrong with them, who would do anything to have those children back. I hope your child is born perfectly healthy and is always ahead of the curve, because I fear for what your judgemental attitude will do to him/her as he/she grows up.
click the button above to read my blog!
On the adoption front....there are people lining up to adopt special needs babies. https://www.reecesrainbow.org/aboutus.html.
Believe it or not, many of the people that are lining up to adopt children with Down Syndrome (often internationally, costing tens of thousands of dollars), are parents of a biological child that has DS. Any many of those people adopt multiple children with DS.
I'm not going to get into all the craziness in the rest of this post, because I think enough people have responded to the OP and her opinions are what they are. I could write a 10 page paper on it, but not going to waste my time. It's sad, but some people are like that, and arguing isn't going to change it one bit. I just wanted to share the resource above.
It's true - a fact - that many people with Down syndrome are not high functioning. I'm confused about what makes you assume so many are high functioning? Is it because those are the more visible people on TV and in public, or do you have another reason for thinking this? One example - my great uncle with Down syndrome just died in his 70s - an extremely long life for someone with Ds - but he never had any quality of life. He couldn't speak, couldn't use the bathroom, and essentially just sat and banged his forehead with the palm of his hand all day, every day. He needed 24/7 care all his life. These are not the people with Down syndrome who we see on TV, in restaurants, working at the store, etc. Granted, he was a child long before EI, so I cannot say to what degree he would have been different if he was born today. However - these people are out there. Not everyone with Ds is high functioning...it's just a fact.
So I actually made it through about 3-4 pages of this before I lost it...and I never get involved in this stuff, as I am a big lurker and try not to insert myself into things too often...
However....I cannot handle seeing you, OP, refer to "man" or "adult" or anything else like that in quotes when talking about people with special needs. Just because there is a mental disability does not mean they are not adults or men or women or what have you. YOU are the reason some parents of children with special needs are afraid to ever go out with their child in public.
I work at a school with the most severe special needs students in our county--severe MR, medically fragile, and extreme behavior issues. Yes these kids and adults (because they go until 21) can be extremely challenging, frustrating, and heart breaking. But you know what? They are also sweet and funny and unconditionally loving. I've been out of work for 10+ weeks because of complications in my pregancy, and in that time 2 of my kids have begun to walk. One of them is starting to talk. They are nothing short of miracles. I'd bet you any amount of money in the world that when these parents heard of their children's accomplishment, they felt more joy and excitement than any parent of a typical child bringing home another A. Yes the challenges are greater, but so are the rewards. I may have more depressing moments at my job than my DH who teaches at a regular school, but you can be darn sure that I have happier moments than he does.
When you see someone with a disability in public, I am BEGGING you--just walk away. Don't let the parents catch you staring at their "child." Don't let the person catch you thinking they are less than an adult, less than human. Because they know. My students, despite how severe their MR may be, KNOW when people don't like them. They can see it and feel it and hear it. And it hurts them, just the same as it would hurt you. You think your heart would break with disgust if the RN placed a baby with Down Syndrome in your arms? Imagine how your heart would break if you saw someone looking at your baby with that disgust.
Oh and by the way...when I was FIVE, a 9 year old boy with severe autism ran up to me, hugged me and wouldn't let go for a good 3-4 minutes. His mom started to run after him, but my mom stopped her, and wanted to see what my reaction was. You know what I did? I hugged him back. I was the first person outside of his family to hug him. And about 10 years later, I discovered he was my best friend's cousin. Be careful of who you look down on, you never know what kind of connection already exists or will develop in the future.
nope. not every mother. i think you probably tell yourself to feel better. but like i said to someone before. it's good to know your limitations, but don't for one second think there aren't people out there capable of loving unconditionally and ::gasp:: not feel one bit of repulsion.
Your daughter is beautifl. Thank you for sharing her story.
Unless it is found that the baby has a severe abnormality or illness that causes great pain, I would not abort my child. There are definitely terrible things that babies in utero can be found to have, but I would never abort for something as non-threatening as Down syndrome.
Edited for spelling.
it wasn't because he was special needs... it was because she had been in a coma for dysentery. many women have died doing exactly that, so please don't try to compare these cases.
let's also point out the ludicrousness of the teabow story, since his mother was pregnant with him in the phillipines, where abortion is completely illegal and has been for the better part of the last century. the idea that doctors there would recommend an abortion is pretty far-fetched, since that would have likely resulted in jail time and the loss of their licenses.
I love this post! Well done.
This is way off topic but don't be naive enough to take all your information on the subject from Gloria Allred. Just because abortion is illegal doesn't mean it doesn't happen or that doctors don't perform them.
See the following NY Times article:
https://www.nytimes.com/2005/05/15/world/asia/15iht-phils.html?_r=1
The duckface your making in your photo. Thats what makes you a bad person.
This is hands down the most disgusting post I have ever read!! Hollowstar has a lot of growing up to do and some of the crap that comes out of her mouth!!! You talk about being digusted if your baby was placed in your arms and it had DS or talking about what do they contribute to the world!! Who do you think you are? You are hands down probably one of the most nieve people I know. I was taught to accept everyone for who they are no matter what. And I do and have had a chance to meet some incredible people because I dont look down on a disability. And some of these people have been the most caring and loving people I know!
You put people with disabilities in a "group" and talk about not wanting a hug etc from them that they are "greeters" which is something that you obviously think is not good enough. What really makes you so much better then people with mental or phyiscal disabilites?? It certainly is not your ability to accept people and love unconditionally!! So really who is the one with the "mental" disability???? The more garbage that comes out of your mouth the more I think it is you!
https://www.kellehampton.com/
read this blog..it is beautiful and about a woman in my city who recently had a baby with ds. She didnt know she had ds until the bay was placed in her arms.
https://www.kellehampton.com/
read this blog..it is beautiful and about a woman in my city who recently had a baby with ds. She didnt know she had ds until the bay was placed in her arms.
God bless them!
miesl - I hate to keep this hot mess of a thread going, but I wanted to respond to you (and w/out quoting just cause it was getting so long) in as non-drama manner as I can, because I think you have done the same.
Anyway, I understand where you are coming from in the sense that I also would not choose to create a child with CF - we had MH genetically tested before TTC for this very reason, and would have done IVF/PGD if it had come back positive. Luckily, for us, it didn't. You are correct in that a person with CF has a crappy hand dealt to them, and I would not want to intentionally create a person who had that situation. (However, I am pro-life and, if said "person" was already in my body, then I would not abort because I see it as they already exist and a life w/ CF is better than no life at all. BUT, I am not trying to judge you because you would do otherwise, I just wanted to let you know where I was coming from.)
What bothered me was your statement that people with CF don't live fulfilling lives. I have heard people say that before, and I think it spreads misinformation - I see SO MUCH of it out there. People are in SHOCK when I tell them I have CF - it's like they expect me to be already dead or at least unable to keep a job and somehow "look" like I have CF. And it's this impression that sometimes leads people to decide to abort when they learn their babies have CF. If a person knows all the facts, that's different, but I just want people to know that most people with CF are able to go out and take on the world and make a difference and get enjoyment out of life. Yes, life is usually shorter and more challenging, but it still worth being given a chance.
And, I have felt the emotions of your husband - the fear about the future, worrying about CF affecting my job, being freaked.the..out when I've coughed up blood. I've felt incredibly sorry for myself when I've had to skip happy hour to do my treatments, or when I'm so achy and miserable from an infection, yet I have to suck it up and go about my day as normal because I don't have enough sick time. And I can totally relate to the fear of not being able to have children - last summer, when we were in the middle of failed IUIs, was the time I hated CF more than ever. I cried every single day.
Yet, despite dealing with all this crap, I would never say I haven't been given the opportunity to live a full life. Never. Ever. Ever. CF is a huge part of my life, but it is just a challenge that was given to me. It does limit my opportunities, but so do many other things that other people are born with - you could also say that someone born into poverty isn't given a chance to live a fulling life, or someone with diabetes, or someone with only one leg - yeah, they may not have a higher chance of dying at an early age, but they are all born with obstacles that may create fear in their lives and may prevent them from doing some of the things others can do. Everyone has some crappy card dealt to them, and I don't think it's fair to say that, just because some card might be crappier than another, it means their life can't be lived to the fullest.
At first they told us it was 33% chance he'd live to 20, but with a very low quality of life, 33% chance he'd die in the weeks following his birth and 33% chance he'd die in the womb. When we went back a few days later we were told the atresia was much more complex than they'd first thought (complete vs partial- he literally had no pulmonary artery) and that he probably would have died in the womb but would have surely died in the weeks following his birth.
And it was still a really, really sucky decision. It's not something I'd wish on my worst enemy, but my husband and I are proud of what we did and how we did and are handling it. We love our son. He was a planned, wanted baby. We were doing the best thing for him and nobody will ever convince either of us differently.
Also, I don't think anyone can say what they'd do in the situation until the are presented with it. I myself had always said "I'm glad abortion is legal, but it's not something I could ever do." I was wrong. In Max's case, termination was the humane and loving thing do to- the right thing, so many, many doctors told us.
some of those people in line shouldn't be there.
https://poundpuplegacy.org/node/20819