Jump to content

Menu

Down-Syndrome twin???


Recommended Posts

Have any of you heard about the story of the twins born at the Arkansas Children's Hospital??? The one was born healthy, the other with down's sydrome and the family only took the healthy one home and abandoned the one with down's syndrome?

 

It's all over FB but I cannot find a single link, news website, etc. anywhere to verify the truth of the story. It's a horrific tale...maybe that's why my brain needs it to be false.

 

Anybody know anything about it?

Link to comment
Share on other sites

I hope and pray that it's a false story. I cannot even begin to say how that makes me feel. My dh's younger sister had Down's Syndrome. She passed away 12 years ago and has left a huge hole in the family. She was such a very special person with so much love to give and was such a blessing to everyone in that family.

Link to comment
Share on other sites

With a google search, this was all I could find.

 

http://www.smiles4downs.com/2010/11/22/prayers-for-baby-doe-in-arkansas/

 

So sad, I hope it isn't true. However, the parents may realize their limits. This baby may be better off with loving parents, rather than parents who are overwhelmed by two babies let alone one of them having special needs. I would rather they give the baby up than to take him home and be abusive or neglectful towards him.

Link to comment
Share on other sites

no, but I sure wish I could have that Downs Syndrome baby. I've always, ALWAYS had a soft spot in my heart for DS kids. Even when I was a kid myself and I worked with mentally challenged kids, the DS kids just warmed me to the core of my being.:001_smile:

 

I don't know about that story, but one friend recently posted this on Facebook: http://reecesrainbow.org/new-family/thechildren

Link to comment
Share on other sites

It's better than selective reduction. By "abandon" do you mean relinquished for adoption (I don't see a problem with that). If you mean left on a doorstop abandoned, that is awful.

 

According to what I read they left the baby at the hospital with a DNR order and relinquished their rights to the baby. So yes, the baby is available for adoption.

 

But again, this is all from blog posts and FB posts. I am looking for a credible source.

Link to comment
Share on other sites

I have no doubt this happens. It breaks my heart.

 

I had a friend who aborted her ds baby in the third trimester after being diagnosed. I offered what support I could, praying that she would reconsider. It really shook my core. Some familes just don't think they are strong enough to deal, but they will never know what an absolute blessing it could have been.

Link to comment
Share on other sites

I can't find the story either. For whatever reason, the parents (prospective adoptive parents or not) must not have felt like they were able to take care of a handicapped child. I do not fault them for that. I'd prefer to have the child raised by parents who'd welcome the challenge, not parents who are not up for the task. There are rosy situations with Down's Syndrome, but there are also huge trials involved, and so many people downplay the demands placed on the parents (And yes, I know that's probably an unpopular viewpoint). Not everyone's equipped to deal with it.

Link to comment
Share on other sites

I cannot be angry with a family for realizing their limitations in raising a child. This baby is much better off in a loving adoptive home than in one where it is unwanted. Babies with Down's are highly adoptable in the US.

 

 

I think it saddens me more than angers me. What makes this particularly troubling is that they were willing to separate twins. That non-disabled child will never know his special sibling, however "imperfect".

 

I really, really try to show grace in situations like this. But knowing parents who wanted a child so desperately, but terminated him when they found out he had ds, really leaves me heartbroken. I get that they don't think they're equipped, either emotionally, financially, etc. But they will never know. They stopped that journey before it started. What's that saying about kicking a gift horse or something like that? Yes, I want a child. But oh, no, not an imperfect one. As if there's any guarantees with children anyway, whether they appear disabled or not.

 

Just very sad.

 

ETA: I do realize that there is a difference in this case, as the mother decided to carry the baby to term and not selectively abort, assuming they knew the diagnosis before hand. Although, one has to wonder that if this was the case, why adoption arrangements were not made prior to delivery.

Edited by Momto5girls
Link to comment
Share on other sites

Unless you have been in this position, I would be careful of judgement.

This is coming from a mom who had monoamnionic twins born at 30 weeks, and had to make very tough decisions beforehand.

I have one surviving twin right now. That is all I am saying.

:grouphug: To that woman.

Link to comment
Share on other sites

Unless you have been in this position, I would be careful of judgement.

This is coming from a mom who had monoamnionic twins born at 30 weeks, and had to make very tough decisions beforehand.

I have one surviving twin right now. That is all I am saying.

:grouphug: To that woman.

 

 

:grouphug: I'm sorry, Dancer.

Link to comment
Share on other sites

It is truly heartbreaking. Here is a link to a blog article about it, and the author is encouraging people to write both the hospital and the AR governor to express their outrage:

http://idahopress.newswest.com/blogs/thenextpage/?p=315

 

Wow, I just read this. Insane. The fact the baby is DNR makes me wonder what the heck is going on, and I hope there is someone to speak for that baby.

Link to comment
Share on other sites

Yes, I want a child. But oh, no, not an imperfect one.

Referring to major handicaps as being simply "imperfect" minimizes the struggles of those who walk that road. I don't know anyone who would give their child up for "imperfections". I do, however, know people who've had to accept the fact that they just were not at all equipped to deal with major handicaps. No one makes that decision lightly, and it seems unfair to have a Pollyanna attitude that if they'd just have tried, they'd certainly be able to accommodate. I'm currently witness to a situation where I wish the parents *had* been more realistic about their capabilities. At this point it's just sad to watch. :sad:

Link to comment
Share on other sites

Referring to major handicaps as being simply "imperfect" minimizes the struggles of those who walk that road. I don't know anyone who would give their child up for "imperfections". I do, however, know people who've had to accept the fact that they just were not at all equipped to deal with major handicaps. No one makes that decision lightly, and it seems unfair to have a Pollyanna attitude that if they'd just have tried, they'd certainly be able to accommodate. I'm currently witness to a situation where I wish the parents *had* been more realistic about their capabilities. At this point it's just sad to watch. :sad:

 

How can a family know if they reject the prospect outright? Truly, we don't know where a road will lead. Call me Pollyanna, but I do think there are many happy endings that were never given a chance.

 

ETA: Calling them "imperfect" may minimize the struggles of parents on that road, but rejecting that baby for their disability minimizes them. In a big way.

Edited by Momto5girls
Link to comment
Share on other sites

I don't get it. People get all bent out of shape that mothers choose to abort a DS baby, now they're also mad that a mother would choose to have the baby and give it up. So basically the ONLY right thing this mother could have done was decide to keep the baby?:glare:

 

 

Leaving a baby DNR, separating them from their twin. I'm sure there's more to the story, but yes, I see this as wrong. Sorry.

Link to comment
Share on other sites

How can a family know if they reject the prospect outright? Truly, we don't know where a road will lead. Call me Pollyanna, but I do think there are many happy endings that were never given a chance.

I'm sorry, but in the case of parents who know their capabilities well enough to know they're not able to handle the stress, expense, etc, I'm not willing to risk the well-being of a child on a possible happy ending. There are lots of prospective adoptive parents who are willing and able to do whatever it takes. That sounds like a better chance at a happy ending, especially for the child.

Link to comment
Share on other sites

I don't get it. People get all bent out of shape that mothers choose to abort a DS baby, now they're also mad that a mother would choose to have the baby and give it up. So basically the ONLY right thing this mother could have done was decide to keep the baby?:glare:

 

No kidding. We don't know these people's situation (and for their sake, I hope they can manage to keep their privacy). We have no idea if they even have medical insurance. Many people do not. Look at this laundry list of potential DS health complications: http://www.downsyn.com/whatmed.php (When you look at percentages, odds are not good this baby won't have at least one of those MAJOR medical concerns.).

 

That would utterly destroy a family without very good insurance. Since so many are willing to take that baby, why is that not the best thing? Because they didn't put both babies up for adoption? If they had, we would never have heard of them. No one would make a peep if they had also given up their "perfect" child.

 

Oh, and even though I've met many wonderful people with DS, and families that appear to have it all together, I do realize not every family could handle this.

Link to comment
Share on other sites

I must be missing something. This doesn't add up at all.

 

So according to one article - twins were born and prospective adoptive parents opted to take just the one?? Or was it the bio parent who decided to keep one?

 

So was it the adoptive parents who signed a DNR?

On what authority?

If they didn't take placement of that child, they have no right to sign a DNR on that child's behalf. They have no rights at all to do or say anything about that child.

 

That blogs says the agency did it? No way. There are plenty of parents who would adopt that baby. An agency would never do that knowing there are families open to adopting a DS child.

 

And TPR couldn't have been final therefore it's not up to them to decide what happens to the baby.

 

There are too many things about this story that don't add up - either this is a lot of misinformation or this isn't real.

Link to comment
Share on other sites

I'm sorry, but in the case of parents who know their capabilities well enough to know they're not able to handle the stress, expense, etc, I'm not willing to risk the well-being of a child on a possible happy ending. There are lots of prospective adoptive parents who are willing and able to do whatever it takes. That sounds like a better chance at a happy ending, especially for the child.

 

Really? So one is so sure at the outset that their lives just cannot accomodate a disability? Families don't adapt, find ways? You state a family knows their capabilities, but I disagree. None of us know what we are capable of.

Link to comment
Share on other sites

I must be missing something. This doesn't add up at all.

 

So according to one article - twins were born and prospective adoptive parents opted to take just the one?? Or was it the bio parent who decided to keep one?

 

So was it the adoptive parents who signed a DNR?

On what authority?

If they didn't take placement of that child, they have no right to sign a DNR on that child's behalf. They have no rights at all to do or say anything about that child.

 

That blogs says the agency did it? No way. There are plenty of parents who would adopt that baby. An agency would never do that knowing there are families open to adopting a DS child.

 

And TPR couldn't have been final therefore it's not up to them to decide what happens to the baby.

 

There are too many things about this story that don't add up - either this is a lot of misinformation or this isn't real.

 

The bio parents decided to leave the Down's baby at the hospital, and take the healthy one home.

 

You have a point there about the DNR. Once someone relinquishes their rights, how can they make that decision? I wonder about that too.

Link to comment
Share on other sites

No kidding. We don't know these people's situation (and for their sake, I hope they can manage to keep their privacy). We have no idea if they even have medical insurance. Many people do not. Look at this laundry list of potential DS health complications: http://www.downsyn.com/whatmed.php (When you look at percentages, odds are not good this baby won't have at least one of those MAJOR medical concerns.).

 

That would utterly destroy a family without very good insurance. Since so many are willing to take that baby, why is that not the best thing? Because they didn't put both babies up for adoption? If they had, we would never have heard of them. No one would make a peep if they had also given up their "perfect" child.

 

Oh, and even though I've met many wonderful people with DS, and families that appear to have it all together, I do realize not every family could handle this.

 

 

A child with DS or other severe disability would be covered by medical assistance.

Link to comment
Share on other sites

The bio parents decided to leave the Down's baby at the hospital, and take the healthy one home.

 

You have a point there about the DNR. Once someone relinquishes their rights, how can they make that decision? I wonder about that too.

 

That blog post says the agency placed the DNR - they would legally have the right, but why?

 

So the healthy baby wasn't placed for adoption? That makes more sense. But there are still pieces that don't add up. I would like to hear from a reliable source.

Link to comment
Share on other sites

It's not the adoption that upsets me so much (although I think families are capable of much more than they might believe they are and sadly will never know). If I understood correctly, the parents left the DS baby at the hospital with a DNR? That is what has me upset. I don't understand how this could happen.

Link to comment
Share on other sites

That blog post says the agency placed the DNR - they would legally have the right, but why?

 

So the healthy baby wasn't placed for adoption? That makes more sense. But there are still pieces that don't add up. I would like to hear from a reliable source.

 

I agree. I feel bad for the parents and for the child. I think it's wonderful that they realized their limitations and put their child up for adoption. Adoption can be a wonderful thing. Who are we to judge others for making a difficult decision besides?

 

Is the child not expected to make it? Is it possible that the parents left the other child at the hospital because it had such severe medical problems that they couldn't bring it home?

 

I'm thankful everyday that I haven't had to make any decisions that difficult.

Link to comment
Share on other sites

I must be missing something. This doesn't add up at all.

 

So according to one article - twins were born and prospective adoptive parents opted to take just the one?? Or was it the bio parent who decided to keep one?

 

So was it the adoptive parents who signed a DNR?

On what authority?

If they didn't take placement of that child, they have no right to sign a DNR on that child's behalf. They have no rights at all to do or say anything about that child.

 

That blogs says the agency did it? No way. There are plenty of parents who would adopt that baby. An agency would never do that knowing there are families open to adopting a DS child.

 

And TPR couldn't have been final therefore it's not up to them to decide what happens to the baby.

 

There are too many things about this story that don't add up - either this is a lot of misinformation or this isn't real.

 

This is why I posted it here. I am trying to find out what is TRUE about this story and what is being spinned to cause arguments and discord.

Link to comment
Share on other sites

Why would the baby need a DNR in the first place? A DNR is a "do not resuscitate" order, right? For people having heart attacks or respiratory failure, right? Usually used when parents (or the patient) do not want extraordinary measures taken to save a very sick/disabled patient, often because they feel the person is suffering. (It's not withholding food or water, which one blog seemed to imply, right?) So would that imply that the baby had serious health problems (aside from the Down's)? Or was is just part of standard paperwork done for all hospital patients?

There is a lot missing from this story.

Link to comment
Share on other sites

This is why I posted it here. I am trying to find out what is TRUE about this story and what is being spinned to cause arguments and discord.

 

Yeah. It's strange - you would figure the hive would know! I mean they know everything! :001_smile:

 

I was really confused and thought there had to be something I was missing.

It seems so off....and really unbelievable. BUT

One thing I find really odd is neither the governor nor the hospital have issued a statement to say STOP bugging us - it isn't true. If it wasn't true at all, wouldn't issue a press release saying so? Maybe they haven't had time?

 

But no reputable source has commented on it. And the same article is being reposted all over.

 

It's all so weird!

 

And the fact that the hive doesn't know - leaves me scratching my head too. And just like you - hoping it's mostly not true!! As a mom (an adoptive one too), it hurts my heart.

Hopefully, official word will be release soon.

Link to comment
Share on other sites

Being in the DS community on FB, this was the most recently posted post.

 

"Official update on behalf of the Arkansas Down Syndrome Association:

 

Dana McClain, esq. a representative of the the protection and advocacy system for the state of Arkansas has looked into this matter, and based upon the information has been able to confirm as true and factual, at this time, is confidant that ACH is providing medically appropriate care, there is no DNR, and there is a competent guardian in place for the child.

 

Please post to your FB page as to avoid rumor or misinformation. I will keep you updated. I personally know the couple who is interested in adopting. They have a 3 year old son with DS who is in my daughter's pre-school class. Many others are stepping up, so I'm not sure exactly how the process will go.

 

Dawn C. Adams, MAP"

Link to comment
Share on other sites

According to the stories I read, the babies were both supposed to be placed for adoption, but the baby with Down's also has severe medical issues, so the adoptive parents only took the healthy baby. The agency supposedly put a DNR on the baby, but that doesn't seem legally possible to me, so maybe that's incorrect.

 

According to this website (not that it's necessarily more accurate than any other, but it does at least make more sense):

The babies were scheduled to be adopted. Born at 37 weeks, one baby was apparently healthy and has just gone home with his new parents. The other, born with Down syndrome has serious medical complications and is fighting for his life. This baby is not going home and has no home.

 

I do think there's a big difference between a mother abandoning an otherwise healthy DS baby she gave birth to (as some of the stories seemed to imply), and adoptive parents declining a baby with life-threatening medical problems in addition to special needs.

 

Jackie

Link to comment
Share on other sites

The bio parents decided to leave the Down's baby at the hospital, and take the healthy one home.

 

.

 

This is not how I"m reading it. From the article that Blueridge posted, it sounds like an adoption was planned for both twins, but after the birth the adoptive parents only adopted the healthy baby and not the DS baby. I think (maybe I'm wrong - it's hard to tell the way things are worded) that the bio parents always intended to give up both babies.

Link to comment
Share on other sites

According to this website, which seems quite credible, the baby seems to have multiple, potentially very severe, medical issues:

Last Thursday, twins were born in Little Rock, Arkansas. The birth mother had entered into an adoption plan for her twins. Prenatally, by ultrasound, brain malformations consistent with Dandy Walker Syndrome were observed in one of the twins. When the child was born, the child was identified as having Down syndrome along with significant pulmonary hypertension. The adoptive parents backed out on the medically fragile twin, but adopted the other twin.

 

Dandy Walker syndrome "may include a variety of other symptoms, including congenital heart problems; malformations of the face, fingers, or toes; other structural anomalies of the brain; abnormal breathing patterns; mental retardation and delay in physical development..."

 

Jackie

Edited by Corraleno
Link to comment
Share on other sites

I do think there's a big difference between a mother abandoning an otherwise healthy DS baby she gave birth to (as some of the stories seemed to imply), and adoptive parents declining a baby with life-threatening medical problems in addition to special needs.

 

 

But why would adoptive parents get a pass if birth parents don't? Or are you only giving them a pass because the baby isn't healthy, as in it would be okay for birth parents to relinquish custody if it wasn't a healthy DS baby, but not if it was, and it would be okay for adoptive parents to back out if it wasn't a healthy DS baby, but not if it was? I can't see it as possibly being fair to hold the birth parents to a higher standard than adoptive parents.

 

Honestly, I still don't agree with any of this idea that birth parents should keep a DS baby if it's one of twins. That doesn't even make sense. So if it's a singleton birth, they should feel fine about giving it up, but not if it's a twin? And yet they shouldn't abort, so???? There is just no end to the things people will find to judge someone about, is there?

Edited by Snowfall
Link to comment
Share on other sites

Referring to major handicaps as being simply "imperfect" minimizes the struggles of those who walk that road. I don't know anyone who would give their child up for "imperfections". I do, however, know people who've had to accept the fact that they just were not at all equipped to deal with major handicaps. No one makes that decision lightly, and it seems unfair to have a Pollyanna attitude that if they'd just have tried, they'd certainly be able to accommodate. I'm currently witness to a situation where I wish the parents *had* been more realistic about their capabilities. At this point it's just sad to watch. :sad:

 

Thank you. It is extremely difficult decision to be realistic about parental limitations largely because of harsh judgmental attitudes. The generalization of Downs victims as gentle forever children makes it worse for those parents faced with difficult decisions. DS manifests in a wide spectrum of severity, not only mentally but physically too. People tend to have similar overall impression of Pixieism (Williams Syndrome) as they do of DS.

 

Like another poster here said, it truly is something you cannot understand unless you have lived through it.

 

Children with intellectual disabilities understandably can become violent because of intense frustation with regard to their limitations. The absolute worst time usually is during the teen years because hormones are thrown into the mix. Home, which should be the family's refuge, can become a war zone. Pushing, punching, hitting, and biting family members can occur in spite of skilled parents' best efforts at de-escalation by talking and by stimulus removal. Thorazine was the chemical straitjacket of choice decades ago; I do not know what is now used.

 

According to the IdahoPress article, both twins were to have been adopted. I am glad the prospective parents acknowledged their limitations before getting in over their heads.

Link to comment
Share on other sites

But why would adoptive parents get a pass if birth parents don't? QUOTE]

 

The birth parents chose to get pregnant, or at least they chose to engage in the act that led to the pregnancy. When they did that, they assumed responsibility for any child that was the consquence of their actions. The adoptive parents did not make that choice.

 

I am not necessarily defending either set of parents, but I do think that there is a difference in this case (and in any case) between the levels of responsibility of the birth and potential adoptive parents. Once potential adoptive parents turn into real adoptive parents, of course they have the same level of responsibility towards their children that birth parents have.

 

Terri

Link to comment
Share on other sites

Have any of you heard about the story of the twins born at the Arkansas Children's Hospital??? The one was born healthy, the other with down's sydrome and the family only took the healthy one home and abandoned the one with down's syndrome?

 

It's all over FB but I cannot find a single link, news website, etc. anywhere to verify the truth of the story. It's a horrific tale...maybe that's why my brain needs it to be false.

 

Anybody know anything about it?

 

I live in Arkansas, just a few miles from Children's Hospital, and this is the first I have heard of this story.

 

Does anyone have any factual information about this? Or is it just a Facebook rumor?

Link to comment
Share on other sites

I live in Arkansas, just a few miles from Children's Hospital, and this is the first I have heard of this story.

 

Does anyone have any factual information about this? Or is it just a Facebook rumor?

 

"Official update on behalf of the Arkansas Down Syndrome Association:

 

Dana McClain, esq. a representative of the the protection and advocacy system for the state of Arkansas has looked into this matter, and based upon the information has been able to confirm as true and factual, at this time, is confidant that ACH is providing medically appropriate care, there is no DNR, and there is a competent guardian in place for the child."

 

 

That is what is what the DS board that I'm on on FB posted last. ACH can't comment, due to HIPPA, and has neither confirmed or denied having the baby in the hospital (publicly) according to HIPPA law.

 

 

As to the family. I have no judgement toward the birth mom or adoptive mom. I have great respect for a mom who would admit this is a baby she might not be able to handle and then place the up for adoption. (Not sure of the full story, but just in general this is how I feel) There is a LONG LONG waiting list of loving parents waiting to adopt babies with DS in the US. Unfortunately the abortion rate of pre diagnosed DS is 90% so many that are unwanted are never born. THAT is the tragedy. Having walked this road...WALKING this road (raising a chid with DS)...I will be the first to admit that it's hard. On the flip side, the blessings FAR outweigh the difficulties. Because they are your child, you just deal with the bad as it comes and rejoice in the amazing gift they are. I would rather these 90% of women who don't want to raise a child with DS choose adoption rather than abortion. I promise you that ALL of them would find a home....and most would be families who already have a child with DS. Just my .02 cents worth.

Edited by MyBlueLobsters
Link to comment
Share on other sites

"Official update on behalf of the Arkansas Down Syndrome Association:

 

Dana McClain, esq. a representative of the the protection and advocacy system for the state of Arkansas has looked into this matter, and based upon the information has been able to confirm as true and factual, at this time, is confidant that ACH is providing medically appropriate care, there is no DNR, and there is a competent guardian in place for the child."

 

 

That is what is what the DS board that I'm on on FB posted last. ACH can't comment, due to HIPPA, and has neither confirmed or denied having the baby in the hospital (publicly) according to HIPPA law.

 

 

As to the family. I have no judgement toward the birth mom or adoptive mom. I have great respect for a mom who would admit this is a baby she might not be able to handle and then place the up for adoption. (Not sure of the full story, but just in general this is how I feel) There is a LONG LONG waiting list of loving parents waiting to adopt babies with DS in the US. Unfortunately the abortion rate of pre diagnosed DS is 90% so many that are unwanted are never born. THAT is the tragedy. Having walked this road...WALKING this road...I will be the first to admit that it's hard. On the flip side, the blessings FAR outweigh the difficulties. Because they are your child, you just deal with the bad as it comes and rejoice in the amazing gift they are. I would rather these 90% of women who don't want to raise a child with DS choose adoption rather than abortion. I promise you that ALL of them would find a home....and most would be families who already have a child with DS. Just my .02 cents worth.

 

Thanks for the information, Emily.

Link to comment
Share on other sites

But why would adoptive parents get a pass if birth parents don't? Or are you only giving them a pass because the baby isn't healthy, as in it would be okay for birth parents to relinquish custody if it wasn't a healthy DS baby, but not if it was, and it would be okay for adoptive parents to back out if it wasn't a healthy DS baby, but not if it was? I can't see it as possibly being fair to hold the birth parents to a higher standard than adoptive parents.

 

Honestly, I still don't agree with any of this idea that birth parents should keep a DS baby if it's one of twins. That doesn't even make sense. So if it's a singleton birth, they should feel fine about giving it up, but not if it's a twin? And yet they shouldn't abort, so???? There is just no end to the things people will find to judge someone about, is there?

 

This.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...