' [Birth Mother] First Mother Forum: Brain-dead but forced to stay 'alive'

Wednesday, January 8, 2014

Brain-dead but forced to stay 'alive'

Lorraine
In Texas, a brain-dead woman is being kept alive, against her wishes, merely to be an incubator for a 20-week old fetus that she will never hold. Marlise Munoz was brain-dead after collapsing on her kitchen floor from what appeared to be a blood clot in her lungs more than a month ago, 14 weeks into her pregnancy. But as her husband and parents prepared to say good-bye, doctors told them that they were not going to comply with their wishes--and apparently the wishes of Malise herself--because of state law that prohibits cutting off medical support to a pregnant woman.

No matter what.


Texas is one of more than a two dozen states that have such punitive and privately invasive laws on the books, and one of the dozen or so with the most restrictive laws. While some states have allowed more leeway in execution, doctors at the at John Peter Smith Hospital in Fort Worth decided to apply the law in the strictest fashion. Consequently, though she was apparently brain-dead when she arrived at the hospital, Marlise was hooked up to machines that are keeping the fetus alive. Her father, Enrest Machado, a former police officer and Air Force veteran, is the most outspoken about this intolerable turn of events: "All she is is a host for the fetus."

AN HOUR WITHOUT BREATHING
Mr. Machado has been told that his daughter may have gone an hour or more without breathing before her husband woke and found her, a situation that may have seriously compromised the health of the fetus. Doctors have told the family that they will make a decision about what to do about the fetus when it is at the 22 or 24 week stage, at which time it might be possible for it to live outside the womb. "That's very frustrating to me, especially when we have no input in the decision-making process," Mr. Machado told The New York Times. "They're prolonging our agony."

I cannot imagine it.

Ms. Munoz and her husband, Erick, have a 15-month old child. Her husband has returned to his job as a firefighter, but continues to sit by his wife's side at the hospital.

On medical ethicist, Katharine Taylor at Drexel University in Philadelphia, said that the laws were put into place partly to ease the qualms of those who oppose abortion, and she specifically mentioned the Catholic Church. But to me, educated as a Catholic, these laws appear to be more an appeasement to evangelicals and conservatives who insist that basically any action that results in the termination of a pregnancy is wrong and cannot be tolerated, no matter the thinking of the woman carrying the fetus. Yes, some Catholics surely subscribe to this ideology, yet polls of those who identify as Catholic do not indicate overwhelming support for anti-abortion laws. When I learned about abortion in tenth grade biology class at Sacred Heart High School, I learning that the church did not oppose saving a woman's life--even if it meant a fetus might die in the process. That's a policy that is truly "pro-life," much more in keeping with the spirit of the words: pro-life. At the time, people died when they died, and machines were not available to keep "brain-dead" carcasses going in order to be a host for another being.

What is happening here, in Fort Worth, at John Peter Smith Hospital, is a invasive, ridiculous policy carried to it's idiotic extreme. If she were alive, Ms. Munoz would have the constitutional right to an abortion; because she is brain-dead and cannot speak for herself, she is denied one. This is pro-life?

INVASION OF WOMEN'S PRIVACY AND RIGHT TO CHOOSE
Critics of various laws that, say, offer a way for everybody to have health insurance--okay, insist that they do or be subject to a fine--say that the country is going to way of socialism, that the President is insinuating government in areas where it should not be. They don't want to be told to pay for health insurance, and they want everyone to be able to own automatic ammunition clip that can shoot 15 rounds with one trigger pull. Anything short of that is "interfering." But at the same time, conservative religions have pushed and gotten enacted laws that invade women's bodies and erode a woman's right to choose. Talk about the nanny-state! These laws are it. The horrific story of what is happening to Marlise Munoz is a nightmare. This kind of invasion of our privacy and rights must in the end, die out of its own over-reach.

If you are in a state that has such laws, it is never too late to write to your state representatives and send a copy to your elected officials in Washington. If we don't make our voices heard, no one else will.

We usually focus on issues of adoption at FMF, but occasionally stories hit us in the face that cry out
for commentary. When Jane and I gave up our babies in the sixties, abortion was illegal and extremely difficult to obtain, and we faced enormous societal pressure to relinquish our children. Then abortion became legal, birth control became reliable and convenient, mores changed, and it seemed that women would have choices. Today however, in some states those precious choices which our generation fought for are being eroded faster than the beaches out here on Long Island where I live. This story above is only one example--a horrible interpretation of a law, but still, only one. Without change, others will follow.--lorraine
____________________________
SOURCE

Pregnant, and Forced to Stay on Life Support


FROM FMF
Akin, GOP to women: We are in charge of your bodies, no exceptions for rapeAdoption Posters at Abortion Clinics...Why Not Truth-Counselors at Adoption Agencies? We volunteer.Playing Politics with the Morning After Pill

The Declassified Adoptee Essays of an Adoption Activist
by Amanda Transue-Woolston
In clear and plain language, provides a wealth of emotional intelligence answering the difficult questions that adoptees face from the moment they learn they were not born into a family, but adopted instead. Without unnecessary verbiage, Transue-Woolston gets to the heart of the matter of what it means to be adopted, and what needs to change in adoption today. First mothers reluctant to search, adoptive parents fearful of an adoptee's reunion, and adoptees anywhere on the journey will all find much to savor in this wise collection of essays from someone who is destined to be among the leaders of the next wave of adoption reformers. Highly recommended. 

26 comments :

  1. What makes this especially egregious is that it comes right on the heels of a case in which a 13-year-old brain dead girl whose parents wanted her kept on life support was refused! Their religious belief was that if her heart was beating she was alive. They wanted life support until they could move her to another facility. The hospital refused and a judge ruled against them.

    Family is losing all rights to make life and death decisions for their loved ones!! A major loss.

    Where are all those opposed to "big gvt" int? Which side are they on on these issues???

    Supporting the "rights" UNBORN n on citizens over the living!?

    ReplyDelete
  2. Last sentence re-do:

    Supporting the rights of "the unborn" over the rights of citizens?

    ReplyDelete
  3. I don't get you Lorraine. It is ok to kill this baby in your mind but if it is one minute old and adopted, out come your violins. you don't make any sense.

    ReplyDelete
  4. I have to agree with Anon. I think Jane and Lorraine are too liberal sometimes for their own good and the good of others, including innocent children. It is very sad that this woman is brain dead as she is described but the baby however isn't. This child could very well be healthy and as morbid as this sounds, even though the baby's Mom will be dead after taken off the support at least the baby will know who she was. The father of this child needs to take responsibility for his child because putting this baby up for adoption would just make everything worse. I don't understand how he could ever do that anyway, especially when he already has another kid. It would be totally heartless and be like losing his wife twice because he would loose another part of her through the baby.

    ReplyDelete
  5. aLTHOUGH IN GENERAL i AM AGAINST ABORTION i AM NOT AGAINST IT UNDER ALL CIRCUMSTANCES AND AM JUST A MERE HUMAN WHO TRIES BUT DOESN'T ALWAYS DO THE RIGHT THING(IN RETROSPECT) i HAVE NO PROBLEM WITH ABORTION TO SAVE A MOTHER'S LIFE SUCH AS IN ECTOPIC PREGNANCY(PRETTY CLEAR-CUT TO ME) OR MEDICAL EMERGENCY SUCH AS A FRIEND OF MINE WHO HAD A RUPTURED APPENDIX WHEN SHE WAS 5 MONTHS PREGNANT(sorry I had the caps-lock on) The doctors performed a "therapeutic abortion" and she was very upset when she woke up and found they had aborted her baby, Was it necessary to save her life? Who knows. Not me In this instance would the mother want to be kept alive so that her baby could live?Who knows Not me.I probably would but I don't know what it feels like to be in the state she's in Nobody knows.`

    ReplyDelete
  6. Jane and I are liberals. It is true. We are also are pro-choice when it comes to women and pregnancy, and we know that our readers come from the entire political and religious spectrum. But we are liberal and this blog reflects our point of view.

    In this case, the family members--mother, father, husband--all say that being kept alive like this is against the dead woman's wishes.

    ReplyDelete
    Replies
    1. Her wishes under most circumstances. However, this exact set of circumstances was not discussed! I am pro-choice and have a legal directive to not be kept on life support! I'm going soon to amend it to the only situation I would want to be kept on life support is if I am pregnant and the baby might survive! I have also discussed it with my husband and family! Since this woman never at a discussion with her husband about this he can't know what she would have wanted any more than you or I. I personally feel its more likely a woman would want life support continued for her fetus than not. Yes is she was alive she could legally seek an abortion, but see wasn't on the steps of an abortion clinic when this occurred! The baby was wanted! On that same topic, a father has no right to prevent his wife from seeking an abortion and I would be appalled if he did. Why does he suddenly have the right to decide a 20 month old fetus should be slowly suffocated to death now?

      Delete
    2. I'm as pro-choice as you get, but there was not an AD that's part of the problem! If I am ever in this same situation I don't mind being reduced to a "dehumanized uterus" for my child especially since I would be dead! Dead people don't have feeling as far as I know!

      Delete
  7. You anti-abortion people who talk about "killing this baby" are sick. This pregnant woman, an emergency medical technician, made her wishes known well in advance of this catastrophe. In her advance directive, she did not say "if I am ever brain-dead and pregnant, use me as an inert incubator." What you say reveals what you think of women: they are dehumanized uteruses, according to you, the moment they conceive.

    ReplyDelete
  8. Marlise Munoz was down with her pulmonary embolism for an unspecified amount of time; she did not get enough oxygen in her blood, and it caused irreparable damage to her major organs. The fetus needs oxygen, too. Who knows what damage was done during the time she did not get oxygen (or even the resuscitative efforts of shock and medications)? Ms. Munoz's husband made the decision not to continue life support, which was reasonable, given Ms. Munoz's own verbally stated desire not to be kept alive on life support. She was 14 weeks pregnant at the time of her PE, far from the age of viability (generally agreed to be around 24 weeks gestation).

    I read that the State of Texas wants to deliver her at 24 weeks, which brings a whole host of other risks. Babies delivered at extreme prematurity, at 24 weeks, frequently suffer from any number of debilitating problems, including brain bleeds (and permanent brain damage), necrotizing enterocolitis, systemic infections, and permanent lung damage. All of this would be on top of any hypoxic or other insult the fetus suffered at 14 weeks.

    Why not go for the full 40 weeks, given the ridiculousness of forcing a woman to be an incubator? It makes no sense. It seems like a huge political ploy only. It disgusts me. It is not about the fetus's well being. Try taking care of a 24-week baby and watch them suffering, even to be touched, trying to breathe with vastly immature lungs, in a world that is painful for them.

    That said, I believe that it all should have been Mr. Munoz's decision to let his wife die in the first place, in the absence of his wife's written Advance Directive. It is tragic and horrible, but he is the one who has to live with this. It should be his choice, his losses to mourn.

    I have also been following the Jahi McMath travesty/tragedy. It is tremendously sad that she suffered from post-surgical complications; my guess would be hemorrhage/aspiration treated too late. She is gone, as far as the person she was. Her family believes she is alive because her heart is beating, but she will not recover, no matter what they want to believe. It's heartbreaking to read the circus in the media. I have asked myself why it bothers me so much that her family is obsessed with keeping her heart beating, and that attorneys and MDs support their quest for change that won't come. Then I remind myself that it's the McMaths' loss to come to terms with, not mine. I suppose they're not ready yet.

    I believe that families should be able decide what to do (or should follow an Advanced Directive) in terrible cases like these. I believe also these sad cases have much to do with our culture's unhealthy distance from the reality of death and general inability to accept that we will all die. I have friends who work in the ICU and who tell me that families refuse to let 90-plus-year-olds, or people in end-stage cancer go when it's their time, increasing suffering by demanding Full Code, crushing fragile ribs, etc. 90-year-olds and terminal people heal very poorly. You can keep people on life support, but to what end, and truly, for whom?

    My recurrent fear is that Ms. Munoz's child will end up in the adoption pool, if the thought of caring for a (potentially) disabled child proves too much for her husband. Why, why is this what my mind comes to? And of course, the child will have to be "grateful" for not being "aborted" and for being adopted by some saviors. Sick.

    --AdopteeRN

    ReplyDelete
    Replies
    1. I had a partial abruption at 20 weeks and bled profusely having to under several blood transfusions. I was told to abort to save my own life and when I refused was told by the head MFM my son would most likely be a "vegetable" do to the placental issues and my blood loss. I got a second opinion and switched hospitals. After 4 months, laying on my side hooked up to machines being treated with medication that made me extremely sick and posed risks to both of us, I had a perfect, beautiful son who is the best part of me! I think my personal experience certainly colors my opinion here. The doctors were, very, very wrong! He had no complications at all!

      Delete
  9. AdopteeRN: Thank you for your informed commentary. In my own family, I had to deal with brothers who wished to keep my mother alive at any cost, even though she had been telling me for years--due to severe arthritis pain--that she was ready to go and prayed every night to die in her sleep. She unfortunately did not share this with them, and near the end of her life caused extra grief in our family. She did manage to die in her sleep, a month after heart surgery she did not want. I for one do not want to be kept alive beyond what my body can do on its own. Nor do I intend to take drugs and medications that only prolong "life" but destroy its quality.

    ReplyDelete
  10. I am with you, Lorraine! I have an Advance Directive, my friends and family know what I want, and that's not to go on with no quality of life. I don't want to be a shell of who I was, or to suffer.

    I am very sorry your mother suffered and that your brothers did not understand. That happens all too often.
    --AdopteeRN

    ReplyDelete
  11. I wouldn't want to be kept alive on a respirator either but i would want several opinions first Organ harvesting is big business. If I was pregnant,however, at least past a certain point, I think I would want my baby to have a chance at life There isn't much data available on these situations but most of them that info is available on turn out all right for the baby-at least what I can find When my mother was dying she chose the chemo and radiation because she was trying to live for us, especially for my Dad who fell apart and died soon after she did. I am haunted by the memory of her going in for her last session of radiation(while taking simultaneous chemo) The doctor told us that most people drop out before that,it is so brutal. My mother,however, had great faith in the power of medicine. I wouldn't want to go through that. I'll never forget the look the doctor gave me on that Friday morning in April(when the rest of the world was turning to spring and new life), as if to say"Please forgive me,this is my job" He was the executioner and he knew it.

    ReplyDelete
  12. I am curious, Anon, what most of the situations you researched have been, and what "all right" means. What are the data? It is my job to keep babies safe and healthy, and even when things seem to be absolutely fine, the outcomes aren't always as expected. Can you point me to some studies? Do they deal with mothers pronounced brain dead but being pregnant at different gestational ages, and infant outcomes?

    I was talking to my husband about this, and he said that if this had happened to me in a slightly different scenario: I went down but the fetus had (likely) not lost oxygenation and was close to term, he might let me hang on for a little while if the doctors thought it a good idea for the baby. It is not an easy decision, to lose both mother and baby. But it is *not* abortion. That is ridiculous.
    --AdopteeRN

    ReplyDelete
  13. @adoptee rn You asked about the studies I found something that said there were about 30 cases and of those about 18 had live babies and of those only about 6 were followed up on and they were all okay You seem to think I am talking about abortion I am merely talking as a mother who wanted to give my baby a chance at life You know I was in the medical field for a few years too and I know how stressful it can be=I left, but I'll never forget one of my first patients- a woman with multiple myeloma- middle-aged. In those days(mid-seventies) it was almost always fatal. We got to talking and she looked me in the eye and said"All I'm hoping for is to live long enough to see another spring." I was stunned because I was too young to understand. Now I do - life becomes very precious sometimes especially when the time is running out Hey I'm entitled to my views too

    ReplyDelete
  14. @RN Adoptee That was 18 had live,healthy babies but only 6 were able to be found a few years later for followupThe 12 who weren't born alive I think died with the mother- I was going from article to article on the internet yesterday and no I don't know the details sorry but the general idea was that in most cases(the mothers were all brain-dead and on respirators but I don't know what stages the babies were at) if the baby was born alive it was okay I do agree with you though that if they take the baby at 24 weeks they are asking for problems-go a few more as long as they've gone that far-maybe not 'til 40 weeks

    ReplyDelete
  15. Anon, I wasn't saying that you said that it was abortion. That's *my* take on the Texas law being ridiculous after talking to my husband and trying to figure out what we would do, hypothetically and being very annoyed with Texas. Of course you're entitled to your views.

    Any situation ends up with a live delivery after the death of a mother is tragic (emergent delivery). I have seen a few of those, or had the mother code at delivery, which is different than having the mother on life support for whatever length of time and then deliver. I will have to do some research myself!

    --AdopteeRN

    ReplyDelete
  16. @Adoptee RN I have nothing but admiration for good people like you who are in the medical field trying to save lives You have more experience "in the trenches" it sounds like .I was living in the upper midwest where minus 20 degrees in January was not uncommon. Probably, that's the reason for all the references to spring

    ReplyDelete
  17. Husband of brain dead woman sues hospital:

    http://news.nationalpost.com/2014/01/14/husband-of-pregnant-brain-dead-u-s-woman-sues-hospital-thats-keeping-her-on-life-support/

    "The hospital has cited a provision of the Texas Advance Directives Act that reads: “A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient.”

    Experts interviewed by The Associated Press, including two who helped draft the legislation, said a brain-dead patient’s case wouldn’t be covered by the law.

    “This patient is neither terminally nor irreversibly ill,” said Dr. Robert Fine, clinical director of the office of clinical ethics and palliative care for Baylor Health Care System. “Under Texas law, this patient is legally dead.”

    Tom Mayo, a Southern Methodist University law professor, said he did not believe the law applied in this case."

    ReplyDelete
  18. Rain Clair, you cannot impute your feelings onto the woman who is dead but her fetus still "alive." Let us think also about the feelings of the people who will be liable for a child that may not be able to survive without tremendous and expensive care; a non-wealthy father who undoubtedly feels overwhelmed as a single father with a young child; her parents who do not wish the responsibility of a new baby. They all deserve a choice too.

    ReplyDelete
  19. A few issues no one has touched on. Finances have not been discussed. Two parents who are firefighters/paramedics, not making very much money. Without two incomes, can the father support two children, one of which will likely be severely brain damaged? Probably not. Keep in mind estimates of the medical bills he will have to pay are nearing the 1 million dollar mark. If the baby is born at 24 weeks, it will, on average, spend 4 months in the NICU (if it didn't have damage from the lack of oxygen, which is not likely to be the case), probably very much longer. This is of course not taking into account the very likely need for intense medical care for the child for the duration of it's life which is usually expensive as well.
    The one thing I do not understand is the issue of ownership of this woman's body. People seem to think it is currently a possession of the state. If it were in control of the family, they could have (and certainly must have) requested abortion as she was only at 14 weeks. Why was this denied? It seems in Texas, if you are pregnant and unable to speak or write, your body becomes property of the state.
    The people who drafted this law who have been interviewed have said it wasn't meant to be applied in cases like these, implying that the body is not property of the state, and is merely property of the hospital. I don't like the idea that a hospital could claim ownership of my dead body for their own purposes. That's pretty disturbing.
    For those who say this woman, despite her stated wishes, should be required to be used as a machine/womb hybrid because that's what you do, understand your personal decisions don't dictate law. For example, I'd donate all my organs, and then my body to medical science, because it's the only clearly moral thing to do. But I can't force you to do that. If the law required everyone to do so, there would be no organ shortage. My one body alone could save a dozen lives, and teach a dozen doctors. So could yours. So could the bodies of your children, if they die. Why are we not legally required to serve as organ donors after our deaths? People have to die because of some silly sentimental reasons regarding burial? Until you can answer me that, you can't compel this woman to donate her body against her will either.
    And at 14 weeks you think she didn't know she was pregnant with ample time to change those wishes if she wanted to? She didn't. You have to respect that other people will make different decisions than you would in the same circumstances, and that you can't make these types of decisions for others. That would truly be immoral.

    ReplyDelete
  20. The hearing when the judge will hear arguments and consider removing life support is scheduled for Friday.

    I've been reading about the "right-to-lifers" protesting outside the hospital and hope the judge has the sense, fortitude and determination to decide in favor of the father and family.

    ReplyDelete
  21. So it turns out the fetus is severely damaged, something which likely has been obvious for a while. It is not likely to survive if it's got hydrocephaly, which is what it sounds like, aside from the physical deformities. The hearing is tomorrow. I wonder exactly how the hospital will respond. If the fetus is still technically alive, by the law they claim to be following, they must cause the pregnancy to continue. Or will they back down, citing sudden concern for the emotional needs of the family, unintentionally making a pro-choice point?

    ReplyDelete
  22. Ugh. That poor family. Put through so much for this. And as if it wasn't to be expected.
    I hope this helps to change the law. At least then something good will have come out of it.

    Hospital, family concur that brain-dead Texas woman's fetus 'not viable'
    http://www.cnn.com/2014/01/24/health/pregnant-brain-dead-woman-texas/

    ReplyDelete
  23. Update: Judge orders JPS Hospital to withdraw life support for brain-dead pregnant woman

    http://thescoopblog.dallasnews.com/2014/01/fort-worth-hospital-acknowledges-pregnant-woman-is-brain-dead.html/

    ReplyDelete

COMMENTS AT BLOGS OLDER THAN 30 DAYS ARE UNLIKELY TO BE PUBLISHED

COMMENTS ARE MODERATED. Our blog, our decision whether to publish.

We cannot edit or change the comment in any way. Entire comment published is in full as written. If you wish to change a comment afterward, you must rewrite the entire comment.

We DO NOT post comments that consist of nothing more than a link and the admonition to go there.