Bereaved But Still Me

For the Love of Marlise

April 22, 2019 Lynne Machado Season 2 Episode 7
Bereaved But Still Me
For the Love of Marlise
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Show Notes Transcript

In this episode, our guest Lynne Machado discusses a little-known law in Texas that forbids hospitals from disconnecting life support from a patient who is pregnant. Lynne’s daughter, Marlise, died in 2013 while she was fourteen weeks pregnant. She was, at the time, declared brain dead. This little-known law was invoked and, against the wishes of her family; and those of Marlise as stated in her DNR, Marlise was put on life support.

The family, showing that she was no longer a patient for having met the legal definition of death, went to court to have their daughter removed from life support. Join us for this difficult, yet fascinating story which has now become the subject of a documentary film, “62 Days.”
 
 62 Days can be streamed at http://worldchannel.org/programs/episode/reel-south-62-days until July 16, 2018.  

There will also be viewings in: 
•Dallas: Monday, July 23rd 2018, Alamo Drafthouse- Cedars
•Houston: Tuesday, July 24th 2018, Rice Media Center
•Austin: Thursday, July 26th 2018, Alamo Drafthouse – Mueller 
Additional viewings at film festivals are tentatively scheduled for Fall 2018.

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spk_1:   0:08
welcome to the seventh episode of the second season of Heart to Heart with Michael, a program for the bereaved community. Our purpose is to empower our community with resource Is support and advocacy information things. Season's theme is a celebration of life, and we're fortunate today to have Lynne Machado on the program with us Today show is for the love of Marley's. Lin's daughter, Marlise Munoz, died November 26 2013 probably from a pulmonary embolism. Ah Hospital in Fort Worth, Texas, mandated her deceased body be placed on life support because she was 14 weeks pregnant. At the time of her death, the hospital John Peter Smith, felt they were following a little known law because she was pregnant. Her husband and her parents sued the hospital tow have her body removed from life support, the judge ruled in the family's favor, Marley's left behind a husband, Eric, and a baby boy. My Tail Lynn stories about informing the public about this little known law and working on getting that law changed. A documentary entitled 62 Days detailing the 62 days or family championed on behalf of their deceased daughter, premiered at the A F I meet the Press Film Festival in Washington, D. C. On November 16th 2017 Lynn Welcome to heart to heart with Michael.

spk_3:   1:21
Thank

spk_4:   1:21
you for

spk_3:   1:21
inviting me to be on your show. I'm very honored, Michael,

spk_1:   1:25
Tell us what happened on November 25th 2013.

spk_3:   1:27
My daughter, her husband and Matteo had come over for dinner. Uh, they left to 10 oclock at night. Four hours later, we see the phone call from Eric stating that there had been an emergency. We rushed over to their house and I was thinking it had something to do with Matteo, who was 13 months old at the time. Instead, when we got there, we learned it was our daughter. Marley was found on the floor, unresponsive, and her husband,

spk_4:   2:00
who

spk_3:   2:01
was a paramedic and fireman, administered CPR and called the 911. The paramedics. They rushed her to the hospital. John Peter Smith. My daughter had a total between 10 and 12 epinephrine, and after each effin effort, she would code on day I went to the head nurse and I noticed that she had been very careful on how she worded updates with us, and I asked her if it's bad is and she confirmed it. Waas. In the meantime, they take taking my daughter and, uh, administer the cat scan to her decision body. It came back defining the definition of brain dead, which meets the criteria for death. And at that time we were given a quiet time up on the third floor of I see You, where we were met with the E. R. Doctor. He met us in the hall and told us that he had just been made known about this little, little no Texas law stating that a pregnant patient must not have life saving equipment removed. We had mentioned that our daughter was a paramedic. She had seen many different kinds of incidents and trauma and the effects on the family, and she was always telling us and that she would never, ever want to be placed. Unlike support machines, she even had a D. N R sticker placed on the back of her paramedic badge. Had she been in an accident, then they would know what we decided. It was that very quickly that our hands were tied. We knew our daughter's wishes. This was never about pro choice

spk_1:   3:59
It

spk_3:   3:59
was never about life. It was about honoring our daughter's wishes to never have her own life sustaining machines.

spk_1:   4:09
Do we know who informed the doctor?

spk_3:   4:11
No, I do not. And I have tried to find out, and that's the question that we've never been able to get an answer to.

spk_1:   4:19
And I want to ask you something else. Did somebody seriously expect that a week 14 she would stand life support deceased for 26 weeks.

spk_3:   4:27
Yes, they did. And we kept saying, You know, when we had we had a meeting with the ethics committee and then we had a meeting with the CEO and all. The chief of staff's and I had both meetings mentioned that I understand the intent of the law. Uh uh, But our daughter is not a pregnant patient. Our daughter is the seats. Then she met to clinical independence.

spk_1:   4:55
They were saying that she was a patient and you were saying that she's deceased. How could they then, with the brain dead? Patients say this is a patient

spk_3:   5:04
they were trying to gloss over that a patient is someone that is, is the thieving medical kill. A person is defined as Ah, living human. Well, our daughter was brought a living human so on. And she wasn't receiving care. They were. They were using my daughter as an experiment because actually say, at 14 weeks, the baby is what it was then is I Goat is never viable. They're not viable until 24 26 weeks. And so, in essence, with what the hospital was doing was using my daughter as an experiment. And they told us we're going to see if she can carry it in 16 weeks to 18 weeks, 20 weeks. Andi, that's when we said we need help. We need to get a lawyer because they weren't listening to us.

spk_1:   5:57
Did they think that they were going to have, ah, birth at 40 weeks, that this was gonna go all over the term?

spk_3:   6:02
That's what they were hoping. Or maybe 36 weeks. There have been cases where people women have been on life support at 36 weeks. They take the other, put on life support, they take the baby by Caesarean, and then the woman's taken off life support. But at 14 weeks, there was never, ever a chance for for this unborn Tiu have been able to live.

spk_1:   6:27
What's the time frame for? For beginning life support and getting us faras 36 weeks?

spk_3:   6:32
All I know is that a baby is not a fetus is not viable until it's right around 24 weeks. That was still 10 weeks out for when my daughter died. Is the pregnant mother dies? You know, the the person growing inside guys are Our daughter was without blood flow and oxygen for well over an hour. And, um, we they administered test all daily on the on the fetus. And there was there wasn't any brain activity. There was deformities from the waist down

spk_1:   7:15
they faced

spk_3:   7:16
aren't even sure it was a girl. The doctors, um, were 85% shirt was a girl and Eric warning to name her on. So he gave her the name Nicole, which is our daughter's middle name. But there were heart problems, and every time they administered a test, there would be more problems that they would they would find out about without a brain, you know, and heart issues and and the deformities with with, you know, the internal organs. So even by some miracle against medicine, if the baby wasn't survive if there was no

spk_4:   8:02
chance forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

spk_2:   8:21
Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify.

spk_4:   8:31
I love the fact that the proceeds from this CD are actually going to help those with Joe Hart to fix

spk_2:   8:37
Join Music

spk_4:   8:38
Home Tonight forever. You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com Now back to our program.

spk_3:   9:02
What we decided was we needed some some help and to contact some lawyers that would represent us in a lawsuit against JPs Hospital.

spk_1:   9:13
The doctors were okay with knowing that that a lawsuit was coming because they were recited,

spk_3:   9:18
their hands were tied and and they had told us, uh, they did not agree with the council that was being given to them from the district attorney and that they were adamantly against what they were being asked to do. But again, the hands were tied. And we say, Well, we will let you know that we're filing a lawsuit, but it is not against the care. It is not against the doctors or the staff. JDS It's against the council that you are receiving from the district attorney. So they knew we were going thio Thio. All of this was in the news. It not only was local and national that it was international, there was controversy because people were trying to often make it pro choice or pro life. And that was never our intent. We said in the very beginning this is not pro choice. This is not pro life. This is about honoring our daughter's wishes for a d. N r. And and we still stand committed to that to this day.

spk_1:   10:31
Okay. And then you were contacted privately on Facebook by somebody had that turning?

spk_3:   10:36
Yes. Yes. Uh, Rebecca Heimowitz, who is a documentary filmmaker from New York, contacted me privately on Facebook and had said she'd been following the story and was, ah, heartbroken about it. And then she was contacting me to see if we would be agreeable to meet with her because she would like to do a documentary on what we were going through. And she felt it was important to shine a light on the present Texas law that gives the hospital administrators the authority to overtly disobey an individual's explicit end of life wishes, which is what my daughter had. There was never a second doubt in any of our minds in Eric or my husband or myself about what our daughter wanted to. And then it was also, politically, uh, used. Our daughter's case was used as part of a political and ethical storm against one person that was but filing for re election. So Rebecca came out and that with us, told this in person, you know, this list division, she wanted to try to meet with an interview as many people as possible. Tom Mayo, who is one of the co authors of the bill. It has gone on record, saying that the bill that he co authored is was not for a patient such as Marley's. It was meant for someone that was cause mottos or, you know, unable to make their own decisions are God. It was not that our daughter was deceased,

spk_1:   12:23
and I wonder, I want to remind listeners that is that there's a technical definition here that we talked about in the first segment. She was deceased and therefore didn't fit the definition of a patient. And that's not certificates of somebody who's comatose.

spk_3:   12:37
Exactly, exactly. They had asked the family they could do a tracheotomy on her. We said no, and they went ahead and did it. They had wanted to put her feeding tube in her stomach. We said no, they went in the hospital when I had did it.

spk_1:   12:55
What do you think they were helping her?

spk_3:   12:57
My body is They were trying to help the fetus, I think. But with anyone with knowledge of child development, there's more Q A child's development, then just blood and oxygen and food. You know there's hormones, there's other things that are involved. And, um, and again, she, our daughter was being used as an experiment to see if, in fact, she her body, um, would carry it. I a man, um, if at what? At a certain point, they would be able to take take it via Caesarean which it never was viable. And so Rebecca talked and way we thought about it and we prayed about it, and we felt that this was one way of meeting our one of our two goals in getting the word out and informing people about this little loan law. We also wanted people to understand and to to initiate dialogue between Ah ah, woman and a man you know, not necessarily husband, but a significant other. Or, you know, the father of a child. The dialogue be initiated. What what do I want to have happen to my body if if I'm pregnant, I'm not pregnant? And way had a lot of positive feedback with that,

spk_1:   14:26
uh, tell me about the film because the film began being assume she started making it in 2014. So it's been several years to film this out. Now,

spk_3:   14:36
yeah,

spk_1:   14:36
and how people see it.

spk_3:   14:38
Facebook as the page entitled 62 Days and After Person likes and follows the page, they'll be kept informed of developments and postings about the documentary where it's going to be shown a zealous other information pertinent for pregnant women. There's also a website at www 0.62 days movie dot com, and this website also has a section called Watch the Film, where people can learn how to host a screening or they could purchase the film. And then there's going to be three viewings in Texas on Monday, July 23rd in Dallas. It will be shown at 6 to 8 at the Alamo Drafthouse Steph Cedars in Houston. The movie can be Dude on Tuesday, July 24 because making as a rice media center and then an Austin on Thursday, July 26 2018 at the Alamo Draft house Guest Mueller and then other viewings at film festivals are scheduled, and bad information will be on the website on Facebook called 62 Days.

spk_1:   15:55
I think a lot of us are looking forward to seeing it, and when we come back, we'll talk about some of us who have seen it. This program is a presentation of hearts, unite

spk_5:   16:06
the globe and is part of the Hug Podcast Network are

spk_1:   16:09
tonight. Theglobe is a non profit organization devoted to providing resource is to the congenital heart defect community to

spk_2:   16:15
uplift on power

spk_5:   16:16
and enrich the lives of

spk_1:   16:18
our community members. If you would like access to free Resource is

spk_5:   16:21
pretending to the CHT community. Please visit our website at www dot hugged

spk_1:   16:27
dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much,

spk_4:   16:35
much more. I was five hours old when I had my first surgery. The only advice I could really give someone like that is to be there for your family. This is life and you have a teeter. Live it or you sit in a corner and cry. I am in a Dworsky and the host of heart to Heart with Anna. Join us on Tuesdays at noon Eastern time on speaker are blocked. Talk radio will cover topics of importance for the congenital heart defect community. Remember, my friends, you are not alone.

spk_2:   17:08
I am with origami l jewelry and we personalized luck. It's It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets and they gift lockets to people who are bereaved or they're celebrating somebody

spk_4:   17:29
to get your own origami. Our luck it contact Nancy Jensen on Facebook for her website. Fancy Dancing may dot origami owl dot com. You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program, please send an email to Michael even at Michael at heart to heart with michael dot com Now back to heart to heart with Michael

spk_1:   17:58
Has the law in Texas changed yet? Is it? Does it look like that's gonna happen?

spk_3:   18:04
But it has not changed yet. I go down to Austin every other year when its legislative session and I testified before the House of Representatives and, um, I present my case. I'm given two minutes to talk. Um, the what will happen is when it does pass the House of Representatives, then we'll go to the Senate and testify in front of the Senate, and then then we'll have a better field if the law will be changed. We're hoping as more and more people see the documentary 62 days, they're they're moved by it. It's it clarified for them what we went through. And, um, I think the more people that see it and are able to voice their opinion to the legislators and just initiate talk among themselves will even help further

spk_1:   19:05
the

spk_3:   19:05
passage of getting the law

spk_1:   19:07
changed. It's probably not a surprise that when we were deciding to take this program on to heart to heart, we had a lot of soul searching within ourselves. And one of the people who works on this program called me a couple weeks ago and said, You know what? Um, I've seen the movie and I don't have that knee jerk reaction that I used to have and that I have learned from this movie that sometimes you have to consider the other side that sometimes you have to look at something in ways that you're not used to looking at it. And I thought that was interesting because, you know, some of us are more pro choice than others, and some of us are less, and that's fine. I'm not making a judgment column just simply stating that. But the idea that people could see a film like this, which is a very difficult film and also a very difficult story to tell and to learn from this, that maybe we have to look doesn't mean that anybody is changing But it does mean that people are opening up their eyes in their minds and their thinking. Is this a good thing for you? Is this enough?

spk_3:   20:13
I think it's a good thing. I think it's a start because being in a Texas An and the Bible Belt views are very much a certain way. And I've heard from categorically everyone that has watched it praise. What a fine job the documentary did is very objective. And, um, it also has impacted women in other states to file suit in their state to help them also, uh, get their rights and procedures for end of life decision making in check. And our story and the documentary and Maher. Lisa's story as well is an impetus that got that going. And I feel very honored that our story continues to make a difference and have a positive impact.

spk_1:   21:15
Who else is involved now in helping you to get this law changed? And I'm thinking on a wider basis, not just in Texas. Who else is working to help get this changed?

spk_3:   21:25
The American Civil Liberties Union of Texas or a feel you partners with Rebecca the filmmaker and has worked tirelessly to help facilitate coordination between a male knew the filmmaker with the family as well as the legislative legislative people that we are working with and tests that were testifying in front of. Also, Abigail Disney from the Disney family has contributed a quite an amount of financial backing for the for the movie. And as part of that financial backing, we received what's known as an impact coordinator. And the job of this person is to work not only what they tell you, that filmmaker, our family and without a Kale. She's working best to figure out a way and how we can best impact the film and to as many people as possible. So we have a Mex exposure as possible because you're right. The film. It was a difficult story to go through. It's a difficult documentary to watch, but its objective and it's told from many different angles, and I feel very, very proud of the efforts. And I know Ma releases, looking down and smiling,

spk_1:   23:00
understand, Free Back is even primarily positive on the film. Have you had negative feedback?

spk_3:   23:06
No, I haven't had any naked to feedback. Everyone is just been, I think shocked case in point. Someone I used to teach with said, You know, I remember you talking about this in hearing it, and but I had no idea until I watched the documentary what all your family went through And, uh, you know, with the protesters at the hospital and just the pure hell that we that we went through. But it

spk_1:   23:36
was who was protesting at the hospital who was protesting for weight.

spk_3:   23:41
Both both people were protesting. One side would be the Karelia fear that I would be the pro choice. And even when we, uh when we went to court before the judge, um, there were protesters at the courthouse for both sides Uh, toys, Pro life.

spk_1:   24:01
Did they not understand? I mean, you've said it here something this is not a pro life or pro choice thing is an issue about your daughter's dignity that has she was already determined by every definition to be dead. So there's nothing here to be pro about.

spk_3:   24:17
Correct? And that was that was our frustration. Are they not listening? You know, because, as you say, it's never been about pro choice or pro life It you know, she lives her life with indignity, and we wanted her to die or have her death be in dignity. And she didn't get that.

spk_1:   24:38
What are you doing now To expand awareness in the public?

spk_3:   24:41
Well, I'm guest speakers not only on podcast such as yours, but I'll be a guest speaker this weekend. June 30th at C. J. McKay, who is a former guest of yours at her

spk_1:   24:54
streak, would stop.

spk_3:   24:56
And

spk_1:   24:56
a great friend of our show. We love her.

spk_3:   24:58
Yes. Yeah. A delight showing the movie of the doctor managed 62 days there. Also, when the show is shown, the documentary has shown in the three Texas cities Afterwards there's going to be a panel in each city, and they're trying to get lawyers and someone in the medical field A swell as the documentary with a Heimowitz, uh, was going to be there a sale. You I will be there and so that people have questions. They can they can ask, and not just, you know, be less like Wow, now what we do, You know, there's some steps that maybe people can take and an awareness like, you know, knowledge is power. And I think the more that we can continue to reach out. Um, it will. It will help this film. It take our cause. And, you know, it's it's one of her legacies is, um, the Doctor Mandiri. Another legacy is, well, 1st 1st like to see Frank with her son Matteo. He insisted his mother son, he has

spk_4:   26:17
loved

spk_3:   26:18
her. Her looks, her expressions. Um, but also, uh, you know, talking. And, you know, I've been on several panels. I said that we've been on TV shows Anderson Cooper and Katy Kirk, and you're trying to get the word out to many avenues is possible.

spk_1:   26:41
You were talking about her legacy. I've never met your daughter. And I only know you in so far as we've been together on this program and the meetings leading up to it. But I think I think that her legacy, among other things and what she's given to her son is, um, she's, uh, my mother would say spunky, but I think she's got I I think I think a lot of character, a lot of focus, a lot of determination, a sense of right and wrong that can't be beat. I think that she's from what from what I can hear from you. I think I know it came from I think it came from you and they can see three generations of that. I'm I wish you all the best of luck. Um, you know, I'll give, you know, about a minute to to close. Um, I know you wanted to give us a quote here. So literal.

spk_3:   27:33
Yes, yes. Um, I'd like to end with a quote from Robert Kennedy quote. Each time a man stands up for an ideal or acts to improve the lot of others or strikes out against injustice, he sends forth a tiny ripple of hope and crossing each other from a 1,000,000 different centers of energy and daring. Those ripples build a current that can sweep down the mightiest walls of oppression and resistance.

spk_1:   28:03
I can't be Bobby Kennedy for a closer. So I want to thank you for being with us today.

spk_3:   28:10
Well, thank you very much for for inviting me to be on your show and allowing me the opportunity to share our experience and to share about 62 days. The documentary. I encourage people to get on the website, look it up and be informed but thank you, Michael.

spk_1:   28:32
And this concludes this episode of heart to heart with Michael. I want to thank you again, Lynne Machado for sharing your story with us. And I hope your efforts to change the law to honor your daughter has inspired everybody who's listening. Please join us at the beginning of the month for a brand new podcast. I'll talk to you soon, and until then, remember, our loved ones are still with us. As long as we keep their memories of life.

spk_4:   29:00
Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share war stories.