Woman with terminal cancer refused treatment and an abortion to give birth

[Soulhuntress]

9 hours ago, Lurky said:

The thing that gives me pause is that she went into a coma since July, so the baby wasn't just very premature, but had been gestating in what was essentially an incubator, and during the Marlise Muñoz case, I think there was medical evidence that there could be major issues as a result for the baby, especially if there has been brain death, like in Muñoz's case, as even on life support, the body starts decomposing. 

I can't tell whether DeKlyn was counted as brain dead, or being kept on life support in her coma, or if she was capable of breathing independently etc, but the fact she died a few days after giving birth seems to be an indication she was on life support. 

So this isn't as simple as "mother refuses treatment for the sake of her baby, then dies", which I can understand - it looks like it's that she may have effectively died earlier, but was kept on life support so her baby could be born.

(Wiki says this kind of treatment is hugely expensive - this from the pregnant-after-brain-death article, but I imagine it's the same for all coma patients)

Chemo is something like $20k per treatment.  The outcome for the DeKleyn family was worth the cost.   

[jozina]

On 11/09/2017 at 4:34 AM, Justmurrayed said:

My initial reaction as I'm 10 weeks pregnant is that she's selfish. She's leaving 5 other babies who will have memories of her for her one baby. Am I an asshole? Possibly. But if it for me I would abort and fight for my life because those babies that are living are going to have to live with that their entire life. That's selfish to me. 

Asshole no, but coming across as not really understanding the situation? Yeah. If you have glioblastoma you are almost certainly going to die soon. Very soon. I don't mean to sound harsh but it's just not a fight for your life. It's a likely very unpleasant few months with some hideous side effects of treatment, very possibly turning into a very different person in a way that could be incredibly upsetting for your children and then a very unpleasant death. There's cancer which you have a poor chance of hitting five years with and then there's this. I have young children and a partner but if I was diagnosed with glioblastoma tomorrow I'd be hoping for a couple of weeks to write my kids some letters, hug them, get photos with them, arrange practical things and then to die ASAP in a way that would traumatise them the least. Her living with this for a substantial period of time just isn't really realistic. It's pie in the sky, unicorns are real kind of stuff. Her giving them a sibling was probably the only good to come out of it.

All the cutesy, inspiring language around fighting cancer and beating the odds falls pretty flat with me at the best of times but the reality of glioblastoma is so damn brutal that it makes me feel ill when used with this sort of thing, unless it's by those who have it or are grieving. If it gives them comfort great. Death is not the worst option a lot of the time and the way western society often treats it like it is or like accepting death is failing is a big problem.

I find a lot of the comments about bodies decaying on "life support" if brain dead very odd and for the overwhelming part I'm not sure where they come from. I can kind of get some of them, but it's not decaying in a meaningful sense. A lot of the comments about what Jahi McGrath's body would have been doing for instance are very odd to me and out of keeping with reality. A few weeks with the mother in a coma are likely going to do minimal harm to a baby, especially in comparison to that degree of prematurity. 

[Lurky]

@jozina Life support keeps delivering oxygen and nutrition pumping into the body, and deals with bodily waste etc, but if someone has suffered brain death, there are a lot of things that can't be controlled, and other parts of bodily functions break down.  This is why when dealing with donated organs, the organs are taken as soon as possible, and it's a mad rush for the person receiving the organ, because they want to get the organs out as soon as possible, rather than, for example, leaving the body on life support for a week and doing everything more slowly.   The rush happens even in countries with universal health care, so it's not just the American issue of cost for the family.

From the wiki article on maternal somatic support after brain death, here are some of the medical issues that can happen to a body after brain death that impact on the unborn child.  In this case, the mother was in a coma for 4 weeks at the very least.

Quote

Throughout their care, brain dead patients could experience a wide range of complications, including "infection, hemodynamic instability, diabetes insipidus (DI), panhypopituitarism, poikilothermia, metabolic instability, acute respiratory distress syndrome and disseminated intravascular coagulation."[2] Treating these complications is difficult since the effects of medication on the fetus's health are unknown.

 

[jozina]

Thanks for that, forgot to mention I'm a doctor.  Originally trained in obstetrics and spent most of my time in a tertiary centre where pregnant women on "life support" were treated quite frequently, but I quit obstetrics and am now in a more acute area. Palliative care, intensive care, the components people refer to as life support and organ donation (both donor and recipient side of things, though much more donor) are very familiar to me professionally and one of them is pretty much my bread and butter. I'd largely be hitting Wikipedia too if this was related to non-gynaecological/obstetric surgery, but medicine, acute care and obstetrics I am very familiar with! Life support is a really awful, medically imprecise term which I hate as do most of colleagues. It runs a full gamut from minimally invasive measures to controlling everything we can.

Practically no aspect of a woman being on "life support" while pregnant is going to compare to the impact on the fetus of extreme prematurity. Everything with medicine and definitely obstetrics is balancing risks. As soon as things start turning you take the baby. When that trigger occurs is more important than what it actually is if that makes sense? In the grand scheme of things keeping a pregnant woman alive who has a glioblastoma is not going to nearly as harmful or potentially challenging from an obstetric/paediatric point of view  as doing it for a woman who is septic for instance. It's flu season here (Australia) and with all of the influenza around I'd bet my house there are women here in ICUs on all sorts of invasive measures who would pose challenges or potential harm far more than one with a brain tumour. The challenges in that Wikipedia quote are real, but in a tertiary hospital most of them are part of the job and usually sequelae of what has made a woman need that assistance rather than the assistance itself.

After brain stem death there is indeed a very predictable sequence of multi-organ failure that occurs. Most of these things are controllable with different aspects of life support. People use coma to mean different things, and brain stem death is one of several things they can mean. If your end game is harvesting organs that can be donated in their optimal state then you are going to have some haste, but it's nothing compared to the haste once the organs are out. You don't want to be starting up interventions to delay the transplant while damaging the organs. If your end game is keeping a heart beating and someone functioning enough that the rest of their body is "alive" (like Jahi McGrath) or keeping organs going well enough to support a fetus (like this case) then the interventions you start will be much more invasive and the outcome/rate of deterioration very, very different. So yes there is hurry with organ donation and yes organs deteriorate after brain death, but the rationale for life support determines what it consists of and so therefore the outcome.

[Lurky]

Never mind

[jozina]

Goodness, I'm not sure where you got all of that from. Tone is so hard to convey online but you sound offended. As I very plainly said I forgot to mention my background. I didn't magically expect anyone to know it, I just forgot to mention it. And again as I said if we were talking about say surgery I'd be largely hitting up Wikipedia too. It's great for what it is. I'm not sure why you think I was saying I don't like Wikipedia references when I said I'd be using it myself if the subject was different.

[Lurky]

@jozina Yeah, I realised after I wrote that I'd probably got your tone wrong - hope I'd deleted before you saw!   I really do appreciate proper degreed medical professional insight, but I'm sick and edgy today, and I misread you - sorry about that!

[chaotic life]

The biggest issue typically raised by keeping a mother alive to save the baby is not in the medical aspects of it but the ethical aspects. Typically, it's not something a woman has had a conversation about prior and there are some huge ethical questions of doing it if you don't know that is what she would have wanted.

In this case, there is no question that was her wishes. Given she was deliberate about her wishes, the ethical and moral action is to do everything in your power as a medical team to honor her wishes.

[EmiGirl]

2 hours ago, chaotic life said:

The biggest issue typically raised by keeping a mother alive to save the baby is not in the medical aspects of it but the ethical aspects. Typically, it's not something a woman has had a conversation about prior and there are some huge ethical questions of doing it if you don't know that is what she would have wanted.

In this case, there is no question that was her wishes. Given she was deliberate about her wishes, the ethical and moral action is to do everything in your power as a medical team to honor her wishes.

I made an advance directive and added in this scenario just in case. If I'm pregnant I want them to keep my body going as long as possible for the baby. If not, let me go.

Eta: I also included though that if there's a choice between me and the baby to choose me. My husband and I talked about and we can always make a new baby or adopt or foster, but we can't make another me. Surprisingly my super conservative anti choice husband agreed.

[EowynW]

@EmiGirl did you just write it out on paper? Did you have to have a lawyer? I want to do the same because I don't want our fundie pro life families swarming my husband if it comes down to me or the baby. I know I sound like a bitch, but I want it firm that I want to live. 

[EmiGirl]

1 minute ago, EowynW said:

@EmiGirl did you just write it out on paper? Did you have to have a lawyer? I want to do the same because I don't want our fundie pro life families swarming my husband if it comes down to me or the baby. I know I sound like a bitch, but I want it firm that I want to live. 

Tennessee has a form you can fill out and get motorized. Check and see if your state has one. 

This is what Tennessee has 

https://tn.gov/health/article/advance-directives

[DarkAnts]

I had a friend die from glioblastoma. He took part in clinical trials and managed to live for 4 years after the diagnosis. We all knew it was terminal and were grateful for the time we had with him. He did the clinical trials to hopefully help other people in the future.  It was a hard road to walk. He was suffering for most of it.

 

After this, I understand why this women decided to give life to her baby vs. possibly living longer.

[Buzzard]

3 hours ago, EowynW said:

@EmiGirl did you just write it out on paper? Did you have to have a lawyer? I want to do the same because I don't want our fundie pro life families swarming my husband if it comes down to me or the baby. I know I sound like a bitch, but I want it firm that I want to live. 

You do not need an attorney.  Here is a pretty good list of advanced directives by state

http://www.aarp.org/home-family/caregiving/free-printable-advance-directives/

Mine is a lot more complicated than these forms, but this will give you a baseline on what to include.  You can retype it and add whatever you feel is important to you.  The important thing is that your agents meet the statutory requirements and that it is witnesses/notarized as your state requires.

I HIGHLY recommend that everyone have one of these both in print and in digital form (because you cant always get to the paper). You will have to amend the form to specifically state that a digital version is to be treated the same as an original.  In addition to this, you should also have a medical power of attorney to make sure that your wishes are clear about who calls the shots.  This is especially important because (god forbid) your husband could be incapacitated along with you.

/lawyer hat off

[smittykins]

 

Life Lynn has passed.

[tropaka]

unfortunately the baby has died.

 

http://nationalpost.com/news/world/baby-whose-mother-chose-giving-birth-over-chemo-has-died

 

Quote

The baby born of a Michigan woman who chose to forgo chemotherapy to give birth to the child has died, a relative said Thursday.

Sonya Nelson said her niece, Life Lynn DeKlyen, died Wednesday evening at the University of Michigan Hospital in Ann Arbor. Life’s mother, Carrie DeKlyen, died Sept. 9, three days after giving birth to her sixth child.

Relatives said Life had been doing better than expected after being born prematurely at 1 pound, 4 ounces (567 grams). Nelson told The Associated Press the baby had good and bad days at the hospital, but “took a turn for the worse” this week.

This October 2013 family photo shows Carrie DeKlyen and husband Nick DeKlyen in Grand Rapids, Mich. Michelle Werkema/Courtesy of Sonya Nelson via AP, File

“We don’t have any answers,” Nelson said, adding “the cards were kind of stacked against her” after being born at 24 weeks and five days into the pregnancy — about “the earliest you can survive.”

“Maybe Carrie needed her,” Nelson said. “It is comforting for us to know that she went home to be with Carrie.”

 

[VaSportsMom]

How tragic. I wonder if people will feel differently about her sacrifice now.

[RosyDaisy]

Rest in peace sweet angel.[emoji72]

[Rachel333]

Well that's a really sad ending to an already sad story.

[chaotic life]

How tragic. I wonder if people will feel differently about her sacrifice now.

No. It was still her body, her choice and she was very clear to the very end what choice she wanted to make.

[love2scrap]

Can I just say that reading this thread here with all its compassion and clarity of mind has made me really glad I am pro-choice? If only people could understand that this is what being pro-choice is about: respect.

[anniebgood]

I just saw this on FB and came over here to see if anyone posted. How sad for the family, to lose a mother and a baby within days of each other. I hope the father and remaining children have a good support system and can deal with the double grief. 

[elliha]

How sad but I understand why the mothe chose to do so. She gave her baby what she could a chance but that chance sadly didn't lead to a long happy life for the child. I understand it must be devastating for her family but "just" her dying would have been too. Humans can get through very tough times and I have hope this family can too.