Fl woman forced to carry baby with fatal anomalies

[Eos]

3 hours ago, MercyA said:

It's an absolute shame that they were not allowed to join in the clinical trial in which supplemental amniotic fluid was provided to other babies by infusion. The article also mentioned that a few physicians are performing this treatment on their own. The technology is not particularly complicated. It's just saline injections.

https://www.cnn.com/2017/06/12/politics/jaime-herrera-beutler-badass-women-of-washington/index.html

A kidney transplant can be accomplished with a living donor, as in the case linked above.

Travel and medical expenses should not be an impediment to receiving necessary care. I would like to see a universal health care system that would pay for life-saving treatment for people of any age. The U.S. spends over $740 billion dollars on defense every year. We absolutely could afford treatment for these babies if we had different priorities.

I read another article about a family who carried their son with Potter syndrome to term and were greatly comforted by the ten hours they spent with him before he passed. Grayson was comfortable with a breathing tube during that time. 

https://aakp.org/grayson-lives-potters-syndrome-posted-august-24-2018/

There remains the question of whether it is wrong to deliberately "terminate" (what a euphemism) a human being because they are disabled or expected to have a shorter life than others. We would not kill a newborn with a fatal syndrome, but rather provide him or her with any comfort care needed. I do not believe this child's life is less valuable than others because he or she has the misfortune of being ill. And this syndrome--as far as I understand it--does not endanger the life of the mother.

I'm thankful these parents were not allowed to terminate their child.

Please, all, do not quote.

Mercy, I know you and I are of different minds here, so I am just offering this knowing it will not change your mind.  Re the bolded above: some people would be greatly comforted, and some would not.  I know this because I had a baby whose water broke at 19 weeks.  I did not stop leaking, nor did I go into labor naturally.  I began to bleed, though still feeling kicks.  I went to the ER and the kind and devout OB there told me so gently, so respectfully, that he could not help me but there were other doctors in another hospital that would.  Our beliefs differed, and he pointed me to a care provider that was aligned with my beliefs.  Amniotic fluid replacement was not an option then, and in any case my amniotic sac was ruptured so replacement would not have helped.  I was given information on my developing sepsis and hemorrhage and I chose to be induced. My baby was not terminated.  He died during the delivery as a result of cord compression due to lack of amniotic fluid.  I felt comforted knowing that he was held by my body for his whole life.  The nurses told me he might be born alive but would die within a minute or two and I was grateful he was not.  We held him and loved him.  I keep his ashes with me still.

I've always been grateful to that kind OB who wouldn't help me.  His respectful care may have saved my life.

[Melissa Louise]

((Eos))

[aggie96]

59 minutes ago, Heartstrings said:

I'm seeing a lot of reporting about how these laws are leading to OBGYN waste lands. ...

My own daughter who starts college in the fall has had her sights on becoming and Ob/Gyn for a few years now. She is in a social group for incoming students interested in pursuing the same thing. About half of them (maybe 20-ish) including her have pivoted away from this type of medicine because of the these laws and problems. She is so disenfranchised with this country at this point.   It's more than just doctors bailing on their current locations. There will likely be an extreme shortage of future women's doctors as well.

[Heartstrings]

5 minutes ago, aggie96 said:

There will likely be an extreme shortage of future women's doctors as well.

Which all comes full circle.  Not seeking prenatal care because it doesn’t exist in your county or one’s near by can lead to prosecution of women for miscarriages, and can lead to removal of children that are born.  More women in private prisons, more babies for the domestic supply, profit all around. Meanwhile the rich and powerful in these states can send their pregnant women to Europe or California.  

Edited February 20, 2023 by Heartstrings

[Starr]

4 minutes ago, Heartstrings said:

Meanwhile the rich and powerful in these states can send their pregnant women to Europe or California.  

That's what they always did when I was young." Oh so and so is going on a trip with her mom" wink wink.

[Faith-manor]

Eos, much love to you from me.

No, it won't have an impact on her. But thank you so much for putting yourself out there and sharing your story.

 

[ktgrok]

Eos, I wish I could hug you. You are an awesome mother, to all your babies. 

[Wheres Toto]

1 hour ago, KSera said:

I’m not sure I said it was no big deal, just that it’s not a super complicated procedure, as procedures go. And I would certainly expect it would carry risk to the pregnancy and it might not work, but in a situation where the baby otherwise isn’t going to make it, it seems like this is something that could be offered to women who want the chance. If it was like an amnio and had a 1% risk of miscarriage, that seems like nothing compared to 100% risk. I haven’t read anything about the research on it though, only the experience from the woman who had them done herself.

 

I wonder if these types of procedures will stop being available because of the risk to the fetus.   We see medications not being allowed, how long will it be before procedures that could possibly harm the fetus no longer be allowed at all?   Since an abortion isn't allowed despite the fact that it isn't a viable pregnancy, will they allow a procedure that could cause an early termination, or will that run afoul of the abortion laws?   

[KSera]

1 minute ago, Wheres Toto said:

I wonder if these types of procedures will stop being available because of the risk to the fetus.   We see medications not being allowed, how long will it be before procedures that could possibly harm the fetus no longer be allowed at all?   Since an abortion isn't allowed despite the fact that it isn't a viable pregnancy, will they allow a procedure that could cause an early termination, or will that run afoul of the abortion laws?   

Oh man, now if that doesn’t encapsulate the crazy place we are, I don’t know what does. 

[Melissa Louise]

20 minutes ago, Heartstrings said:

Which all comes full circle.  Not seeking prenatal care because it doesn’t exist in your county or one’s near by can lead to prosecution of women for miscarriages, and can lead to removal of children that are born.  More women in private prisons, more babies for the domestic supply, profit all around. Meanwhile the rich and powerful in these states can send their pregnant women to Europe or California.  

Despite being desperately sad for American girls and women, that they are facing this cruelty, I've historically thought the Handmaid's Tale comparisons were slightly overblown. I no longer think that. What you say here rings true, only with theology used as a cover for profit and gain.

[Dmmetler]

Just now, Melissa Louise said:

Despite being desperately sad for American girls and women, that they are facing this cruelty, I've historically thought the Handmaid's Tale comparisons were slightly overblown. I no longer think that. What you say here rings true, only with theology used as a cover for profit and gain.

It's bad. It depends heavily right now on where you are, but especially in the SE, you can drive a LONG ways before you get to somewhere that isn't trying to out conservative the next state over. 

[ktgrok]

10 minutes ago, Dmmetler said:

It's bad. It depends heavily right now on where you are, but especially in the SE, you can drive a LONG ways before you get to somewhere that isn't trying to out conservative the next state over. 

This. 

[Heartstrings]

40 minutes ago, Wheres Toto said:

I wonder if these types of procedures will stop being available because of the risk to the fetus.   We see medications not being allowed, how long will it be before procedures that could possibly harm the fetus no longer be allowed at all?   Since an abortion isn't allowed despite the fact that it isn't a viable pregnancy, will they allow a procedure that could cause an early termination, or will that run afoul of the abortion laws?   

Ding, Ding , Ding.   Think about how much LESS likely doctors will be to try something like that when they are personally risking jail time if it fails.  

[Heartstrings]

37 minutes ago, Dmmetler said:

It's bad. It depends heavily right now on where you are, but especially in the SE, you can drive a LONG ways before you get to somewhere that isn't trying to out conservative the next state over. 

Which is what they are doing.  No one is trying for sensible pro life bills.  They are trying to one up each other in this twisted game.  

[Faith-manor]

30 minutes ago, Wheres Toto said:

I wonder if these types of procedures will stop being available because of the risk to the fetus.   We see medications not being allowed, how long will it be before procedures that could possibly harm the fetus no longer be allowed at all?   Since an abortion isn't allowed despite the fact that it isn't a viable pregnancy, will they allow a procedure that could cause an early termination, or will that run afoul of the abortion laws?   

It could. Dd went into premature labor three times between weeks 32 and 34. Time number four they would have risked her life to stop it again. Anymore drugs would have caused her to have life threatening heart problems. But they had to keep him in long enough for the lawyers to do their lawyering together to decide IF the doctors could deliver him early or IF they had to force her to take more of those drugs so no one could be accused of attempting a late term abortion. Attorneys who have never been to med school decided what would happen to her. This part of the story is something I have not talked about here. I didn't want it to cloud over the happiness that she is okay, that baby T came through and is home and everyone breathing a sigh of relief. But I feel like it probably does need to be told.

I could easily see our daughter's scenario becoming a prosecutable offense. She isn't worth anything to the religious whackadoodles and the politicians pandering for those votes. It's all "god's will" in their eyes, and they believe they have the right to force it on everyone else. Margaret Atwood was very prophetic.

The interesting thing is that it will probably have the opposite effect. The younger generations are not going to take this laying down, and they already have a ton of good reasons to NOT have kids. The flood of twenty somethings begging for vasectomies and tubals will continue to rise. 

 

[Grace Hopper]

3 hours ago, Heartstrings said:

Wait, how are repeated infusions into a women's amniotic sac not complicated?  There are women that won't do 1 amniosentisis because the risk of miscarriage is 1%.  I can't imagine that the infusions would be any less risky?  And painful? I feel like I'm missing something with the concept of this being a no big deal scenario.  

I opted out of the pushed-for amnio my doctor wanted do to risk of miscarriage and risk of introducing infection. Imagine this woman accepting an invasive procedure, then becoming septic due to infection, but still not allowed to end the pregnancy. Awful. 
 

(((dear Eos)))

@DmmetlerI think of your story every time this topic arises. 
 

[MercyA]

6 hours ago, ktgrok said:

No one, least of all the parents that very much wanted this child, thinks his or her life is less valuable! It is BECAUSE we value the child that we think forcing it to be born to suffocate is so wrong. 

Parents might find comfort in spending that time with their baby, sure. But did the baby have comfort while their body suffocated to death? A breathing tube is not effective if there are no lungs. They die - after hours of slowly suffocating. There is no comfort measure that makes that actually comfortable. 

Children with this syndrome are not missing their lungs. Their lungs are underdeveloped, unless the amniotic fluid is replenished. 

Did you read the story I posted above? The family said their baby *was* comfortable with supplemental oxygen. 

We don't kill born children to prevent potential suffering, do we? Why is it okay to kill them when they are younger? 

[MercyA]

5 hours ago, KSera said:

I certainly do wish someone had offered the family the option of infusions while it was still early enough, because they clearly love and really wanted this child, and that would have been wonderful. Unfortunately, it was too late by the time they discovered the missing kidneys.

Not true. The congresswoman mentioned in the article I linked was also told it was too late for her baby at 23 weeks. It was not. She is a healthy, happy child. 

[Heartstrings]

18 minutes ago, MercyA said:

don't kill born children to prevent potential suffering, do we? Why is it okay to kill them when they are younger? 

This isn’t killing a child.  It’s allowing the mother to induce labor for a baby that is currently suffering in the womb.  You do believe they feel can feel pain and suffer in the womb, don’t you? You’ve said you believe this baby will be comfortable during his short time out of the womb, with a breathing tube, right?     
 

Whether she could have done the treatment that senator did, she wasn’t able to. 

Edited February 21, 2023 by Heartstrings

[MercyA]

5 hours ago, KSera said:

Time and place. I’m not sure it matters to you, but I strongly think having the above kind of discussion within this particular context makes people less likely to hear your point of view, not more. I know you don’t intend it this way and probably can’t see it, but it comes across as callous and so just serves to further support the idea that pro life people are uncaring and don’t really care about people. I know that’s not true for you, which is why I’m sharing with you how it comes across and that I think it hurts your argument rather than helping it. Similar thing happened last time there was a big discussion of this topic here. 

I appreciate the kindness with which you've phrased your reply, and I know you mean it for my good. But what I find incredibly callous is the lack of regard for this child's life and the attitude that since he or she is not likely to live long, it is therefore acceptable to kill her. 

[MercyA]

6 hours ago, LinRTX said:

Thank you MercyA. And I also believe that as long as that baby is alive it should be allowed to live. And believe me this is very personal to me. My daughter is 19 weeks pregnant with her first who is in a very similar situation. Baby Z had his bladder burst at 15 weeks (at 16 weeks they would have been able to put in a shunt to relieve pressure). He has had no amitotic fluid for 2 weeks but his heartbeat is strong. He is alive.

I am so very sorry to hear this. Are infusions possible for your daughter?

If there is any way we can help, please let us know. 

[ktgrok]

14 minutes ago, MercyA said:

Children with this syndrome are not missing their lungs. Their lungs are underdeveloped, unless the amniotic fluid is replenished. 

Did you read the story I posted above? The family said their baby *was* comfortable with supplemental oxygen. 

We don't kill born children to prevent potential suffering, do we? Why is it okay to kill them when they are younger? 

Ok, severely underdeveloped lungs. 

A person who was NOT even there, let alone had any medical training, said the baby was comfortable. While suffocating to death. Because it had a breathing tube. One that delivered oxygen that the baby was unable to properly use. Or it wouldn't have died. Do you really think suffocating to death is "comfortable"? 

This woman wanted to simply induce labor so that what was going to happen could happen sooner, rather than later, to avoid carrying that baby in her womb for extra months while people kept telling her how happy they were for her pregnancy. 

[ktgrok]

3 minutes ago, MercyA said:

I appreciate the kindness with which you've phrased your reply, and I know you mean it for my good. But what I find incredibly callous is the lack of regard for this child's life and the attitude that since he or she is not likely to live long, it is therefore acceptable to kill her. 

It isn't a matter of "not likely". It is a sure thing. The baby in question will die during labor or within hours of birth. The question is, should she be allowed to induce labor and have that happen now, or have to wait months and have it happen then. There will be no life for this child either way. But the mother will live and minimizing her suffering matters too. 

[MercyA]

5 hours ago, fraidycat said:

Mercy, There is nothing merciful about watching a human suffocate to death and doing nothing to prevent or end that suffering as quickly as possible.

I know you don't mean to sound like it, because you are generally a very kind person. But your opinion on this matter comes across as very selfish and assholey, to put it bluntly. 

Amniotic infusions could have been given, and weren't. Supplemental oxygen can and has been given to other babies with the same condition. 

I appreciate your bluntness. I am also disappointed in some of the opinions expressed here, but I have no doubt that you mean well, which is one of the (many) reasons I refrain from calling you names. 🙂 

Edited February 21, 2023 by MercyA

[MercyA]

4 hours ago, ktgrok said:

Looks like they no longer are even doing trials for those without kidneys - the data didn't support continuing? They are still doing infusions for fetuses with kidney failure from other causes. Update: Due to recommendations from the RAFT trial Data and Safety Monitoring Board, the trial is no longer open to enrollment for pregnancies complicated by bilateral renal agenesis as of July 19, 2022. Enrollment for patients with pregnancies complicated by other causes of fetal renal failure remains open.

https://clinicaltrials.ucsf.edu/trial/NCT03101891

There are still individual doctors willing to do the infusions--not surprisingly, since it has been very effective for more than one child with no kidneys.

[ktgrok]

Just now, MercyA said:

Amniotic infusions could have been given, and weren't. Supplemental oxygen can and has been given to other babies with the same condition. 

I appreciate your bluntness. I am also disappointed in some of the opinions expressed here, but I have no doubt that you mean well.

There is no instance where supplemental oxygen was able to keep a baby with severely underdeveloped lungs alive. Oxygen is not helpful without lungs that function. I know, it is why my mom had to have a lung transplant, because even with all the extra oxygen in the world, she was going to die in less than a year. And it was going to be a bad death. All because her lungs could not process that oxygen. Some of the medical experts weighed in and also said that even a ventilator is not a real option, because forcing the air into the lungs won't work because there is not enough lung there to do anything with.

Also, I have found ONE case of a baby with this particular condition that lived after amniotic infusion long enough to get a transplant. The others had a different reason for kidney failure. 

Would you think the mother should be forced to have saline injected through her abdomen into her uterus over and over again, knowing it has almost no chance of success, wether she wants to or not, for MONTHS, only for her baby to die? 

[ktgrok]

Just now, MercyA said:

There are still individual doctors willing to do the infusions--not surprisingly, since it has been very effective for more than one child with no kidneys.

source? Cause I didn't find that. I found once case of a baby with no kidneys, the one you linked. But, I'm sick and not at 100 percent google efficiency 🙂

[fraidycat]

4 minutes ago, MercyA said:

I appreciate the kindness with which you've phrased your reply, and I know you mean it for my good. But what I find incredibly callous is the lack of regard for this child's life and the attitude that since he or she is not likely to live long, it is therefore acceptable to kill her. 

I find incredibly callous and downright cruel, your lack of regard for the current pain and discomfort of the baby AND the family knowing the baby is currently suffering and will suffocate to death within minutes or hours of being born. That is not a "chance at life", it is an excruiatingly painful death sentence. One that you feel the parents should be gleeful and "comforted" for experiencing.

You.are.wrong.

There is no "two sides" to this argument. Not this time. Cruel, callous, and wrong. 

 

[MercyA]

3 hours ago, Heartstrings said:

It honestly feels as if we're fighting to be seen as a human.

Do you not see the irony here?

[MercyA]

3 hours ago, ktgrok said:

It also seems to have worked maybe once. 

No. The congresswoman said six years ago: "...maybe it took this to break through, because now she’s not the only. She’s just the first. There are other babies who have survived because of her,” said Herrera Beutler. “One just got her transplant last week, another, two weeks ago,” she said.

[fraidycat]

7 minutes ago, MercyA said:

Amniotic infusions could have been given, and weren't. Supplemental oxygen can and has been given to other babies with the same condition. 

I appreciate your bluntness. I am also disappointed in some of the opinions expressed here, but I have no doubt that you mean well, which is one of the (many) reasons I refrain from calling you names. 🙂 

I did not call anyone names. 😙

[Heartstrings]

2 minutes ago, MercyA said:

Do you not see the irony here?

No.  I really don’t.  I trust that you do, in your view of things.   But I sincerely do not. Because your world view is not mine.  And you shouldn’t get to force me to live with the consequences of your worldview. Things that bring you comfort do not comfort me, consequences you believe you will bear are not ones I believe in.  

[MercyA]

2 hours ago, Eos said:

 

Actually, my beliefs on these particular types of situations were changed years ago, largely by @Dmmetler sharing her story here. I think that both patients involved in a pregnancy--mother and child--should receive any life-saving care needed, even if only one life can be saved. Your life was clearly in danger--sepsis and hemorrhage must be prevented. I do not see the situation in Florida as comparable to yours at all, as this mother's life is not in imminent danger. 

I'm so very sorry for your loss. 

[MercyA]

3 hours ago, fraidycat said:

I did not call anyone names. 😙

Okay. I am not saying that the comments of people with whom I vehemently disagree are    and selfish. 😉 

Edited February 21, 2023 by desertflower
language

[ktgrok]

9 minutes ago, MercyA said:

No. The congresswoman said six years ago: "...maybe it took this to break through, because now she’s not the only. She’s just the first. There are other babies who have survived because of her,” said Herrera Beutler. “One just got her transplant last week, another, two weeks ago,” she said.

Yes, but I'm finding the sucesses are with babies with renal failure, not agenesis. (which is likely why they stopped accepting babies with the latter into the study). I found some mention by a lay person that babies who got the treatment were "born breathing", not that they survived. 

That said, either way, the current reality is she does not have that option. Her ONLY options in reality at this moment are 1. induce and baby dies, 2. carry to term, induce, and baby dies. That's it. Those are the options she has, in reality, but because of where she lives only #2 is legal. 

If she had a third option, to do a medical treatment, that she could afford, to save her baby, she would have. But that wasn't an option, so in the real world, right now, we are discussing the options she does have. Or should have. 

 

Edited February 21, 2023 by ktgrok

[MercyA]

2 hours ago, Faith-manor said:

2 hours ago, Faith-manor said:

No, it won't have an impact on her. 

3 minutes ago, MercyA said:

Actually, my beliefs on these particular types of situations were changed years ago, largely by @Dmmetler sharing her story here.

Give me a little credit. 😉 If I think I am wrong, I absolutely will change my mind. And I have about many, many things over the years. 

I still haven't seen any evidence to convince me that the lives of the unborn are less worthy of protection than others. 

[MercyA]

Corrected below.

Edited February 21, 2023 by MercyA

[MercyA]

28 minutes ago, ktgrok said:

A person who was NOT even there, let alone had any medical training, said the baby was comfortable. While suffocating to death. Because it had a breathing tube. One that delivered oxygen that the baby was unable to properly use. Or it wouldn't have died. Do you really think suffocating to death is "comfortable"? 

The FAMILY said their baby was comfortable. 

Edited February 21, 2023 by MercyA

[ktgrok]

1 minute ago, MercyA said:

The story said the doctors said she could carry to term, induce early, or terminate. She said she wanted to terminate. I don't see any indication that she wanted the infusions or sought them out. The trial was closed, but there are other doctors willing to perform the treatment.

I read a few articles, not sure which one, but they said specifically they wanted to induce. Which at 24 weeks or whateve rit was, was considered termination. It's just a form of termination. 

[MercyA]

55 minutes ago, ktgrok said:

It isn't a matter of "not likely". It is a sure thing. The baby in question will die during labor or within hours of birth. The question is, should she be allowed to induce labor and have that happen now, or have to wait months and have it happen then. There will be no life for this child either way. But the mother will live and minimizing her suffering matters too. 

This is just not true. The child is alive now. The child may be alive for some hours after birth. 

Going through a mentally and emotionally difficult time doesn't give anyone the right to end someone else's life.

Edited February 21, 2023 by MercyA

[MercyA]

3 minutes ago, ktgrok said:

I read a few articles, not sure which one, but they said specifically they wanted to induce. Which at 24 weeks or whateve rit was, was considered termination. It's just a form of termination. 

Thank you for this clarification. I was misremembering this portion of the article:

"[The doctor] told them that some parents choose to continue to full term; others terminate the pregnancy through surgery or by inducing preterm labor, she recalled. He said he would begin contacting health-system administrators about the new law, and stepped out of the room to give the couple privacy to mull over their options.

Before they left, Deborah and Lee decided they would like to terminate the pregnancy as soon as they could."

Sorry, I am trying to respond quickly, perhaps too quickly.

 

[ktgrok]

3 minutes ago, MercyA said:

The FAMILY said their baby was comfortable. 

And, no, the woman wanted not to induce, but to terminate.

Inducing labor at that point is terminating the pregnancy.

Quote from the article:

The couple said they decided on preterm induction as soon as possible out of concern for Deborah’s physical and mental health, worries about the baby suffering, and their desire to begin the grieving process.

[ktgrok]

This baby has no kidneys, as well as lung, heart, and stomach deformities. He is not going to live more than minutes to hours. The parents wanted to induce and have it happen as soon as possible. You feel that should be illegal, and she should have to carry until 37 weeks at least, before inducing? Who does that benefit?

I can find no places doing amniotic infusion in Florida for this condition, and even if there were, it would not be covered by insurance. All I can find is a single clinic in Nebraska. 

Edited February 21, 2023 by ktgrok

[Heartstrings]

19 minutes ago, MercyA said:

The story said the doctors said she could carry to term, induce early, or terminate. She said she wanted to terminate. I don't see any indication that she wanted the infusions or sought them out. The trial was closed, but there are other doctors willing to perform the treatment.

Your article about the state senator said she had to travel and be turned down by multiple hospitals.  A waitress is supposed to do that? To find one doctor that is willing to do a procedure that no other doctors are willing to do, if one does exist?   And pay for it, probably upfront, since insurance is unlikely to cover it?  
 

 

Edited February 21, 2023 by Heartstrings

[thatfirstsip]

19 minutes ago, MercyA said:

Okay. I am not saying that the comments of people with whom I vehemently disagree are assholey and selfish. 😉 

This is probably because your beliefs are ones you'd like to impose on us (that is to say, on fertile women in the US), and ours are beliefs we have no interest imposing on you. You're perfectly welcome, in my worldview, to carry such a pregnancy to term, in accordance with your belief. I am not perfectly welcome, in yours, to terminate a pregnancy when I and my doctors think that is the safest or least painful or just plain easiest course. 

 

[Faith-manor]

4 minutes ago, ktgrok said:

This baby has no kidneys, as well as lung, heart, and stomach deformities. He is not going to live more than minutes to hours. The parents wanted to induce and have it happen as soon as possible. You feel that should be illegal, and she should have to carry until 37 weeks at least, before inducing? Who does that benefit?

I can find no places doing amniotic infusion in Florida for this condition, and even if there were, it would not be covered by insurance. All I can find is a single clinic in Nebraska. 

The callous disregard for the mother and family is staggering. But this has never been about life. It is about religious fascism.

[MercyA]

28 minutes ago, fraidycat said:

I find incredibly callous and downright cruel, your lack of regard for the current pain and discomfort of the baby AND the family knowing the baby is currently suffering and will suffocate to death within minutes or hours of being born. That is not a "chance at life", it is an excruiatingly painful death sentence. One that you feel the parents should be gleeful and "comforted" for experiencing.

You.are.wrong.

There is no "two sides" to this argument. Not this time. Cruel, callous, and wrong. 

Gleeful? Never. 😞 This whole thing is intensely tragic. I shared the story of one family who was in fact comforted to have time with their child, who had the same syndrome, after his birth. 

In the limited amount I've read, I haven't seen anyone say that unborn babies with this syndrome are experience extreme suffering in the womb. I have no doubt they are less comfortable than a baby with adequate amnionotic fluid. That doesn't mean we should kill them. Thankfully in this case there is an experimental treatment available, and testimony has shown it can be immediately effective: 

“It was almost a sales pitch,” recalled Herrera Beutler, who couldn’t believe how hard it was to convince this doctor – any doctor – to do something so simple medically.

“It’s not new technology. It was a willingness issue,” said Herrera Beutler. Hospitals told the Beutlers that the baby’s lungs were past the point of development even with added fluid.

They finally convinced the doctor to try one round, and saw instant results.

“Immediately, when that fluid was introduced, her chest heaved and she began to breathe that fluid in. And so you don’t know what’s happening, but you know that she’s doing what she’s supposed to,” said Dan Beutler, who understandably gets choked up remembering that magical moment.

[...]

By the fourth week of saline injections, the Beutlers say everything corrected: Her chest started to open up, her feet were no longer clubbed, and her lungs began to develop.

[ktgrok]

2 minutes ago, MercyA said:

Gleeful? Never. 😞 This whole thing is intensely tragic. I shared the story of one family who was in fact comforted to have time with their child, who had the same syndrome, after his birth. 

In the limited amount I've read, I haven't seen anyone say that unborn babies with this syndrome are experience extreme suffering in the womb. I have no doubt they are less comfortable than a baby with adequate amnionotic fluid. That doesn't mean we should kill them. Thankfully in this case there is an experimental treatment available, and testimony has shown it can be immediately effective: 

“It was almost a sales pitch,” recalled Herrera Beutler, who couldn’t believe how hard it was to convince this doctor – any doctor – to do something so simple medically.

“It’s not new technology. It was a willingness issue,” said Herrera Beutler. Hospitals told the Beutlers that the baby’s lungs were past the point of development even with added fluid.

They finally convinced the doctor to try one round, and saw instant results.

“Immediately, when that fluid was introduced, her chest heaved and she began to breathe that fluid in. And so you don’t know what’s happening, but you know that she’s doing what she’s supposed to,” said Dan Beutler, who understandably gets choked up remembering that magical moment.

[...]

By the fourth week of saline injections, the Beutlers say everything corrected: Her chest started to open up, her feet were no longer clubbed, and her lungs began to develop.

Yes, but 

1. this is the only case I can find of it working

2. the study stopped accepting babies with the particular problem her baby has (no kidneys at all) although they are still doing it with babies with failing kidneys, which implies they were not finding success with babies without kidneys

3. Even if they were, there are no doctors here doing it

4. Even if there were doctors doing it here, it wouldn't be covered by insurance, so they couldn't afford it

5. Even if they can get fluid in there and get the lungs more developed, the baby also had heart abnormalities and stomach abnormalities. 

Which all togethe rmean again, her options were induce as soon as possible, or be forced to wait until 37 weeks to induce. 

 

[Katy]

delivering a baby with a painful and terminal diagnosis is not killing the baby. It is not prolonging the pain for the baby. It is reducing the length and severity of the pain the baby feels, as nerves and feeling of pain in a baby develop after 24 weeks. 

I know pro-life resources try to pretend this isn’t the case, but it is what the science shows. 

Insurance will NOT pay for experimental procedures like amniotic fluid injections. That would be expensive, risky, and unproven. Honestly it’s as ill conceived as the idea that politician had about transferring an ectopic pregnancy to the womb. It’s not possible. It’s frankly clinging to a fantasy that life is that simple, just like this naïve legislation. 

Delivering early also greatly reduces the risks to the mom. 

[MercyA]

33 minutes ago, ktgrok said:

Yes, but I'm finding the sucesses are with babies with renal failure, not agenesis. (which is likely why they stopped accepting babies with the latter into the study). I found some mention by a lay person that babies who got the treatment were "born breathing", not that they survived. 

A quick google search found this:

Ivorie Nicole's three-month old daughter, River, who was born on Oct. 13, also has Potter syndrome. 

"Historically none of these babies survive," she said during a FaceTime interview while holding River at the Rady Children's Hospital in San Diego.

"She has survived, she's living, she's thriving, she's doing wonderful." 

Nicole, who was a participant in the RAFT trial, says she had 23 infusions over the course of her pregnancy. She says doctors discovered River had no kidneys — bilateral renal agenesis — at her 22-week ultrasound.

https://www.cbc.ca/news/canada/newfoundland-labrador/kristen-penney-potter-syndrome-baby-1.5867849