I am going to start by a recent exchange that occurred over at the preeemie experiment. The conversation---rather impassioned but never truly disrespectful---spanned two separate posts (Nov 7 and Nov 6) and garnered more than 100 comments in a 24 hour period! I like to think it began with a comment made that my husband and I made a decision a few months ago that we would not seek resuscitation in this pregnancy prior to 26 weeks. We discussed this with the high risk OB who had delivered our twins at 26 weeks 3 years ago, and duly entered this decision into our medical records.
Thankfully, we were spared the decision, as I am now 32 weeks pregnant.
However, the issue remains a serious moral quandry that I have thought about for quite some time. I had first contemplated a DNR under 26 weeks, hypothetically, years ago, when I began reading more about prematurity. While my twins' 3 month stay in the NICU in 2004 was relatively uncomplicated and they are doing very well now, my decision had less to do with their outcome than with a profound understanding of how dicey outcomes are for all premature infants. Precisely because the decision was NOT made based on my own childrens' outcomes, I don't believe it reflects on how much I value my own children. More importantly, I do not believe that a decision not to resuscitate casts any children's lives as not meaningful. However, this seems a common assumption in the heated exchanges on this topic that I have observed.
I think it is significant that very few people post or comment about DNR orders they have made. Yet a few of us who actually made the decision or acted upon it did comment in this exchange and that to me was a real accomplishment.
I think it is extremely valuable to have these kinds of comments---especially on such a sensitive and unpopular moral issue. The true test of an open and respectful forum is one in which people feel safe commenting on these issues and possibly learning from each other. Sadly, the emotional tenor of the debate led TPE to shut down comments on her blog.
I do hope that this conversation will continue. And I also believe there are many, many equally important issues surrounding prematurity that need further discussion.
Please scroll to the bottom of this website for a set of web pages that include the entire ACOG practice bulletin on resuscitation limits.
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34 comments:
So I take your a buddhist. I am not familiar with that religion. But why should you be able to make all the might decision on who lives or dies. Maybe if you can't see a pregnancy through regardless of what happens by DNR at a certain gestation you shouldn't get pregnant and risk it. Ultimately, if I would consider that a death on your hands. Just because a child isn't perfect or there maybe risks doesn't give people the right to just put it to the side and not try. Of course, this doesn't surprise me since we have countries who kill the old and we are now moving in that direction in many areas in our country. I just disagree completely. Honestly, it is women like you that I think shouldn't bear children.
A very thoughtful post - yes, it is a heart-wrenching decision to implement a DNR, either prior to birth or after the birth has occurred. Many parents have had to make these decisions and not lightly. Interestingly, people do have choices when carrying a fetus who has been dx with genetic abnormalities, however, parents of potential preemies usually do not(prematurity is the number one cause of both death and disability, not to mention profound levels of physical suffering both during the NICU stay and beyond.)
We did make the choice to remove life support for our daughter following her grade IV IVH, and I can tell you, the decision was made with many tears but also intense love and selflessness. We didn't want her to suffer, and she was. Our neonatologist over-rode our decision (due to the Baby Doe Laws, etc) and continued with treatment. She currently is very severely disabled with 2 types of CP - wheelchair, has had multiple surgeries including a rod placement down the length of her spine, botox injections, ham string surgeries, etc. etc. She has uncontrolled grand mal seizures, is profoundly mentally retarded. Her twin has mild CP and high-functioning autism.
I did not choose to have more children precisely because twins run in my family and I could not take the chance of another preterm birth, nor could I chance carrying another baby while caring for 2 high-risk ones. So in a way, I made the choice not to resuscitate by not becoming pregnant again.
Glad to hear that your pregnancy this time around is going so well, and you did not have to implement the tough choices. Best to you!
Of course this is a sensitive topic for me, and for many, but I figured here would be a good place to talk about my opinions and experiences without being dismissed or aggravated (I hope at least.)
Let me begin by saying that the catalyst to my anger on TPE was the comment made by micromom (quoted on my blog) and not about opinions related to resuscitation. The insults about preemie mom bloggers is what set me off, and the insinuation that once my children got older I would be "Helen-like" put me over the top.
How an extremely pre term infant will do in the NICU and long term is variable. Without having a crystal ball, a mother who is about to deliver an extremely pre- term infant, sometimes has a choice.
While my children were in their first weeks of the NICU a baby boy came up to our pod. This 25 week boy was not ventilated on his first day of life. In fact, I think the only time he was vented was for his PDA ligation and ROP laser surgery. Even when we were discussing what the likelihood was of my children surviving, the medical staff said, every baby is different, we have a 25 weeker who is not on a vent, you just never know how they'll do. Another example is my cousin's twin girls who were born this past September 26th at 25.2 weeks gestation. The girls only spent a couple of weeks on the ventilator, and on very low settings. They have been on nasal canulas for the past week (it is only November 13th.) When you don't chose resuscitation it is the decision NOT to initiate life supporting medical intervention. In these cases, little if any life supporting mechanics were involved in keeping these babies breathing, and this is at only 25 weeks.
Of course things are variable. My daughter at 23 weeks was better off respiratory wise than my son, and than many babies born at 24 weeks gestation. My son was the sickest baby in the NICU, their NICU courses were very different, and their current development is different. Although my son is making progress, my daughter is accomplishing her motor development ahead of schedule and without physical therapy. She had the bilateral grade II bleed, he had a grade I bleed on one side. I realize much lies ahead for my children, much more than I could have ever grasped even with all of the information I was given in the NICU.
I wanted my children to survive so badly. I watched as they fought for life, I watched as my daughter got down to only 14 ounces and as my son struggled to breathe even with the most support available. I would have given just about anything to have given them a few more days in my womb, or even better..weeks. You see, my children made the viability cut off by only 75 hours. They just barely made 23.5 and our NICU doesn't resuscitate before 23.1.
Even though I think it is a good point that people should be entitled to their choice without others being offended by that choice, I just don't think it's that simple. To think about someone just giving up before 26 weeks I can't help but think about what I've experienced. I can't help but be affected by the thought of someone simply holding this baby while they fight to breathe. When my sister-in-law's baby passed at 22 weeks, she described how her daughter was gasping for breath and even though she was born before the age of viability at our NICU, watching her daughter gasp and gasp for breath without anyone doing anything deeply haunts her and her husband to this day. To know your child has a good chance of survival and to watch as they came out breathing and continue to breathe for hours without anyone stepping in gives me chills, even though I do believe parents have the right to make this decision.
However, it starts to get fuzzy for me as the gestational age increases. Buddhist Mama, you say you wouldn't resuscitate before 26 weeks and had this in your chart. What would've happened if at 7pm on 25.6 you went into labor and the baby was born?
You set a limit but does that mean you honor it 100%?
I often thought about that for the people who wanted to resuscitate and delivered at 23.0 and a few hours at our hospital. Would the NICU do anything? I don't know. I know there is a weight limit as well, because don't forget, dates can be wrong. So that's another question. What if you set your limit at 26.0 weeks, but you were off by a few days and didn't know it? You think you're 25.5 weeks, but really your 26.1? When I was in L&D they thought I was further along than I was and they kept calling S&E 23.6 weekers, which they weren't because I knew my exact dates. Sure they were off by a day, but when you talk about limits on resuscitation and you are talking about intervening to save a life or doing nothing and allowing it to end, a day means a lot.
Of course I don't think anyone is saying it is an easy decision to put limits on resuscitation, however even if you are comfortable with a DNR before 26 weeks, remember that baby could come at 25.6...what do you do then? And what if your dates are wrong, even if by a few days? Perhaps you're measuring big or small? These are questions I have and why I find placing a limit on resuscitation so difficult, even aside from the emotional difficulty.
I can understand the fear parents have about the long term affects of resuscitating their extremely pre term baby. I can understand them because I've been there. I was and still am to some degree anxious about what lies ahead. I can say I am in awe of how far my children have come already, but of course I know we are a long way from knowing the exact affects their early birth will bring.
What I do know is my children are in many ways like typical children. I think that is the other thing that makes me uncomfortable with limits to resuscitation. My children are so social and so attached to myself and their father. I can't imagine not knowing them, not seeing how they change (some days they look like me, some days like their dad). I can't imagine missing out on their first smiles or their other many "firsts." I think, if these same babies had been born to someone who didn't chose resuscitation, those parents would never know these things. I also think about the mother who would have given anything for her <26 weeker to have made it, but who didn't. How does it feel to know some people don't even try? I'm sure it's very painful, even if it is someone else's personal decision.
I don't want people to feel I am being judgmental or trying to change people's minds about resuscitation. I just think there are things to point out that indicate that there is nothing cut and dry about extremely pre term babies. I can appreciate people not wanting their child to suffer or be unable to live independently. I can appreciate people's fear about having to parent a child with special needs. I guess I am uncomfortable with the fact that people get to deny medical intervention to a child because they are afraid of what the future holds. You'll never know what the future holds unless you experience that future. Opting not to resuscitate leaves a lot of answered questions...I for one would never stop thinking "what if?"
I have seen your comments here and there around the preemie community and wanted to let you know how much I appreciate your calm, balanced approach. Compassion and humility are such important ingredients when trying to discuss such weighty, and emotionally charged topics.
You are so right that assuming the decision not to resuscitate is somehow a reflection of the value a parent places on their child's life is misplaced. I have known many parents who have had to make that agonizing choice and I can assure you that it was never for lack of love or fear. My own story is such a muddled mix of what choices we had, what choices we didn't have, and the choices we had but didn't know it. It is hard for me to say we categorically chose not to resuscitate our twins because it was never put to us in such a black and white way. Nevertheless, our 23 week twins did not receive heroic measures and both died quietly, and I hope peacefully, shortly after birth. Four years later I can assure you and anyone that there is nothing about that "choice" that feels easier or better than the alternative. I don't know that the alternative would have been right either- but I can tell you that I still think of them every single day and will forever wish they were here.
Resuscitation in the gray area of viability is an uncomfortable subject. So is death. So is disability. I just hope that anyone else who joins in this discussion can follow your lead and proceed with kindness and grace.
To All---
Apologies for the delay--there was some computer glitch and the comments only appeared today...
To Lori,
Thank you for your honest thoughts and the moving way you speak about what must have been and still seems to be a terribly difficult choice. The issue of resuscitation seems to involve some suffering regardless of the choices made; there are no easy answers.
To 23wk/twins mommy:
I appreciate your long and thoughtful response. I do think about what it might have been like to have a child born very close to the viability date and possibly not struggling very much. While I would not have chosen heroic measures, I honestly can't precisely how much I would have wanted done to further survival. If the child was breathing on its own, I would have opted to continue other treatment. But to know what exactly one might have done in such a situation seems impossible and I do believe that experience alone can answer the question.
I do think that we cannot know the future in advance, but we can have some inkling of outcomes from reading blogs and medical literature. That said, each person draws their own conclusions. The ability to have options is important and it is informed parents who can best advocate for their children based on the options they have.
In preparation for an article I'm writing for a perinatal journal, I've been going over the most recent medical literature about the treatment of under 26-week infants.
This treatment is consistently characterized (by the neonatologists themselves) as experimental, uncertain, highly painful, and inherently damaging.
Outcomes have not improved since the 1980s, except that now more and more profoundly disabled children are suriving.
These children often die lingering deaths during childhood. The vast majority of survivors (>80%) suffer from serious health and cognitive/motor/and behavioral problems.
New risk factors for seriously poor outcomes are emerging: for example, PDA surgery was recently shown to carry an over 50% risk of severe handicap (serious enough to be diagnosed before age 2, longer term follow-up will be necessary to look at less severe outcomes such as autism. The need for ROP surgery is also highly correlated with serious brain damage.
The destructive effects of the ventilator, steroids, and supplemental oxygen have been known for the last ten years at least but rarely shared with parents. Nor are the longterm risks of TPN, x-rays,ultrasound, toxic exposures in the NICU, phototherapy, various nutritional strategies, poor growth, BPD, NEC, etc, etc, candidly discussed with parents.
Knowing what I know now, I could never consent to resuscitation for my own baby under 26 weeks. I personally feel it is too cruel. I certainly wouldn't want similar treatment myself.
When I go to neonatal conferences, and the audiences of physicians are asked how many would force this treatment on the children of others (without their informed consent), almost every hand goes up. When the audience is asked how many of these doctors would want this treatment for their own newborn preemies, nearly every hand stays down.
I think this speaks volumes. As do the balance sheets of hospitals and for-profit medical companies who prosper excessively from providing NICU care.
I believe the time has come to return decision-making to *fully* informed parents.
Thanks Helen for that informative input. I think many parents are cuaght in bit of a bind regarding this issue. Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts. Conversely, those who may one day face the decision are not adequately informed by the medical community or may have far too little time to research these outcomes before making some very hard choices.
Which is why these kinds of conversations about resuscitation are SO important and yet far too often shunned in the blogosphere as too controversial, too touchy, too difficult.
Buddhist Mama,
I respectfully disagree with your statement:
Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts.
I for one am neither unwilling nor unable to look at these facts. These facts were not given in any type of detail or coherent manner when I was in labor at 23.2. There would have been no way to grasp all of this in the state I was in. Now that my decision has been made, my love for my children makes it impossible for me to say I wish I didn't make the decision I did. This does not mean I turn a blind eye to the realities of the treatment they underwent, nor the difficulties they will likely face long term. I am not unwilling nor unable to recognize the trauma that my children went through with intensive NICU treatment; I was there, I lived that reality right along side them. As much as I was more informed than other parents, was I prepared for the NICU? Hell no I wasn't prepared for it. Does this mean I regret my decision and wish my children were dead? No. The love I feel for my children makes it impossible for me to look at statistics and research and wish I had a made another choice. I cannot imagine life without them, and truly believe they deserve to be here.
What it does make me feel is a strong desire for parents to be educated about prematurity and treatment, and to have the information they NEED to make a decision they feel good about. There will always be parents who cannot opt for death regardless of outcomes. The extreme example is pregnant women who know there is something very wrong with their fetus and still opt to carry that child, even if death is inevitable at birth. There will always be parents who opt to utilize the medicine that is available to save their child's life. There will always be parents who believe the price is too high to pay. Either way, those who have made a choice to resuscitate may be very capable of ingesting facts about treatment and outcomes, but who believe their children's lives have value and are forever thankful they made the choice they did. As I'm sure parents who opted not to resuscitate feel when they read facts and feel they saved their child from a terrible existence. After all, I believe one who opted not to save their child would have to believe that their child's life would have been miserable, how else could they live with their decision?
I just have a hard time understanding why parents who opted to save their children are always accused of being naive or "sticking their heads in the sand." We live the realities of our children's lives. Those with motor delays, SPD, eating issues, shunt malfunctions, etc etc, that's right in a parent's face every day of their lives. The affects the vent has had on my son's lungs is evident every time I check his O2 tank and replace his nasal cannula. Every time I give him a puff or he needs steroids for his cold, I'm reminded. Every time my daughter says "ma ma," I hear the affects of her paralyzed vocal cord from her PDA ligation. But every day they smile at me and crawl over to me and reach to be picked up I'm reminded how close I came to never having that experience. Every night I tuck them in and tell them how much I love them I remember the nights I did that in the NICU and wondered if they'd live to see the next day. Yes these children face monstrous obstacles as a result of their prematurity and treatment, please believe many of us are aware of these things and yet still find it in our hearts to love and live by our decisions. And trust me, for me, that is an extremely easy thing to do.
To 23weekstwinsmommy:
I am the one who used the quote on TPE "sticking our heads in the sands."
It was *clearly* directed at the media who give incomplete "miracle baby" stories and the public that will not face up to the long-term expenses involved in saving these babies and will not agree to higher taxation necessary for the school systems to provide for these children in later life. It was never aimed at parents who made an informed decision to go forward with resuscitation and treatment.
I don't believe I ever used the word "naive" in these discussions.
I find it interesting that people who disagree with 23wktwinsmom always find the need to attack her or try to make her look ignorant... I find the arguments from 'the other side' lacking in tact, which makes their message missed because people stop reading at that point.
I have no idea who you are trying 'convince' when you degrade people who don't agree with you, but I highly doubt that you will get more people to agree with your statements than with hers, which are much better worded/eloquent, than yours.
Think twice before you post - it will seriously help your 'cause'
To anonymous:
Who do you think is attacking whom? Please give specific examples.
And consider signing your name.
I wrote the last post. I don't know why it didn't register my real name, which I *never* mind giving.
Also, for those of you who would like contact me directly with your views, my personal email is Helen1144@aol.com.
Perhaps we do not want to leave our real names because we are protecting our children from finding these exchanges via google searches later in life. Perhaps to protect ourselves from receiving email from you Helen. You will also note that "we" are not the only anonymous ones. There are many comments from your "camp" that are signed anonymous as well.
To anonymous,
Protecting your children from your own comments, I can undestand that...
But you will never receive unsolicited email from me. No one ever has.
But if you wish, at any time, to discuss these issues with me personally and privately, I am available. I do not try to hide my identity.
And I'm not sure what you mean when you refer to "my camp." What, exactly, is your "camp"?
Helen,
Must everything you say to anyone who disagrees with you be so sarcastic? Honestly, it is this behavior that turns many off to having a true discussion with you.
We are in two camps yet again. Sadly, the discussion all too often leads to polarization when my hope is that it might lead to understanding. I would like to say at this point that I have learned much from 23w/twins eloquent comments, and respect her position absolutely. When I do not include you and most of those who post here in my characterization of parents unwilling to consider facts. Indeed, simply by reading, and/or responding all of us are considering these facts. And I am the first to admit that I may change my, contradict myself. But I am willing to discuss these issues in a public forum, however difficult that may be. What I object to the notion that these ideas should not be discussed or that one who broaches them somehow does not love or 'should not bear children' as one anonymous commenter noted. It is that intolerance I object to.
That last comment was by me, Buddhist mama, not Ashok.
To anonymous:
My response was not meant to be sarcastic. I think you are reading things into my words that aren't there.
I would like to return to the issues, and would seriously like to know why you seem to object to parents having choices about resuscitation and treatment in areas of high experimentation, pain, mortality and serious ongoing morbidity for survivors (eg for preemies <26 weeks gestation).
I understand and respect informed choices in this area whatever they are. Do you?
I completely respect informed choices. What I do not respect is the idea that each parent cannot come to his/her own conclusion. I do not respect the idea that anyone choosing not to resuscitate is somehow a bad person. I just wish that some of the posters here and on other blogs would refrain from assuming that choosing resuscitation means that that parent is either uniformed, has their head in the sand, or will end up regretting it.
I am an adult and I deserve to be treated as such. The patronizing attitude that a parent who chooses resuscitation just "doesn't know better" is getting old.
That would really be all I ask in these discussions. I do not ask that you back down from your viewpoint at all.
To anonymous:
Then it sounds to me as if you and I are in complete agreement.
And once again we are back to the same story, different blog. I admit that it does leave me sad, tired, and frustrated to read the ongoing discussions - yet I continue to be drawn to them because the message on both sides is SO important. Prematurity is a catastrophic event, PERIOD. Noone gets away unscathed. Parents need to know all of the possible complications that their child faces/could face. Where this discussion always gets ugly, however, is when it turns to opinions on quality of life. We quit discussing the issues, and start making judgement calls "because of XYZ - life will be too hard, and pain will outweigh happiness". Helen Harrison has stated clearly that nothing short of full function is acceptable to her personally, and by inference she believes that IF her son had been given a choice, he would hold the same belief. While for me and mine I do not agree, I do not have the right to argue with her PERSONAL beliefs. I certainly am not going to tell her that as life progresses, she is going to change her mind. What the others are asking for is the same respect for their PERSONAL beliefs. In my case, I believe that despite her disabilities, my daughter has a life to lead, and will leave her mark on the world in countless ways. 16 years after a very tramatic birth, our lives are not what they were "supposed" to be maybe, but they are all that we have, and all that we know. While there are days that my husband and I look at each other , roll our eyes, and say " we had children, why exactly??" it is said much more often about our F/T extremely ADHD son than our former 25.5 weeker total care daughter.
Simple respect, that is all that is being asked for.
To Beth who said: " Helen Harrison has stated clearly that nothing short of full function is acceptable to her personally"
****
I have *never,* *ever,* said any such thing, and I am wondering how and where you got such a mistaken idea!
I don't even know anyone who has completely "full function" including myself. Your misunderstandings and misstatements of my views are astounding!
I find that while some of you object to what you consider to be my "sarcasm," you feel perfectly free to insult me based on your own unfounded projections and false inventions.
And you call that "respect"?
I was not, EVER, going to drawn into this, I swear I was not. And yet - here I am finally posting - maybe because so many of the other voices that I have stated their views much better than I ever could have fallen silent.
Okay, Helen - if my "misunderstandings and misstatements" of your views are so astounding, please, correct me. It was not my intent to insult you - I simply paraphrased how you are coming across to many of your readers. But fine, then I will ask you to put it in black and white - at what point do you feel that a person has no quality of life? Does it have to be a mental disability? A physical one? A combination? Without Neonatology there would be a lot less handicapped children in this world - but the flip side of that is that there would be many healthy ones missing as well. Are you truly advocating for informed consent in the delivery room and in the NICU, or are you attempting to persuade as many individuals as possible NOT to resusitate?
Thanks Buddhist Mama for clarifying.
I have grown a lot by involving myself in these conversations since last January. I still remember one of my fist comments on TPE. I truly believed that even with information and "scary" statistics, MOST parents would opt to try and save their babies life just out of sheer love and connection to that child growing in their body for the past 20 some odd weeks.
I now know soo much more about prematurity and have a much better understanding of what NEEDS to go into the decision making process. I know that we are EXTREMELY lucky with respect to our 23 weekers. I know there is a lot to be seen, but I know we have much to be thankful for.
I understand the fear that a parent goes through when they have to abandon what they expected when they were "expecting." Almost everything changes when you have a very premature baby.
I know there are children suffering immensely because of the affects of their premature birth. I know there are children who defied all the odds. It's such an unfair thing to ask of a parent..."do you want us to try and save your baby's life?" Saying either yes or no has drastic, life changing implications.
This all being said, I have chosen not to get in the back and forth here because it doesn't do any good. There is a common ground between people who would resuscitate and those who wouldn't. I am not that far off from the things people who wouldn't resuscitate believe. I believe in parental right to end support; and believe that it is actually unethical at times to continue to support in some extreme cases. I myself have stood in a place of judgment, watching a family refuse to listen to the Drs in the NICU and continue to insist on treatment when their very tiny supposed 28 weeker suffered day after day on maximum settings on a ventilator. She spent much of her days with sats in the 20s. I wanted them to take her off life support and hold her. It was easier for me to want that than it was for them. That was their baby.
I believe there are children who are living life in pain and suffering because they were over treated, and the families were not prepared for the care involved for these children. I think it is beyond unethical that treatment would continue for a child who was so extremely affected by a severe bleed or seizures, whose parents believed enough was enough, but the Drs continued anyway. I am thankful there are NICUs who do not practice in this way, and believe it needs to be a nation wide practice to acknowledge when treatment needs to end if there are certain events or issues present and that's what the parents agree to.
Where I differ from some is lumping a group of gestational age babies together and saying these children shouldn't be given a chance. It's probably especially difficult for me to digest this belief because it translates that my children shouldn't be here. It means, that somehow their outcome won't be good enough to have granted them a chance at life. I can't agree with this because I live with these children. I watch them grow, learn, laugh, and thrive. They are cognizant of their surroundings and take an active part in life. And yes, they are only 14 1/2 months old but there are things that are evident at even this young age. There are also other examples (which can be found on my blog roll) of former 23 and 24 weekers who are thriving and not enduring a miserable existence.
If I had chose not to resuscitate and somehow was granted the majestic ability to be able to see what my children had I opted to save them I can't see how I could live with myself. Imagine if the ghost of Christmas Future flew me over to my house right now and showed me my two children playing here together on the floor. Picking up toys, each trying to grab what the other has, babbling, smiling, and playing. Yes, there are the many Drs appointments, breathing treatments, vomit, developmental delays, worries about the common cold, I'm sure future IEPs and school meetings, possible behavior modification plans, etc, etc. But to me, those things don't warrant my children being dead.
The truth is maybe I feel the way I do because I don't think our lives are anything close to horrible. Because the way I feel about my kids makes waking up every day to do it all over again possible. Because I know they deserve every ounce of my fight to make sure they are not denied the basic liberties that I enjoy as a healthy individual. Because I'm ok with helping them along the way. Because I'll make it to every Dr's appointment, physical therapy session, and IEP meeting and not complain about it.
This is all possible because I've found the truth online. Because I don't expect life to be a breeze. Because I know they won't "catch up by age 3." Because I've already made the commitment to care for them as long as they need me to. Because I've given up what I thought would be, and accepted that we just don't know. Because I don't need them to follow in my footsteps and graduate at the top of their class from a top ranked private college and get an academic scholarship to law school. Because I don't need them to follow in their father's footsteps and become a nationally ranked athlete. Of course this is said with a tinge of sarcasm because there is so much more I worry about than them not doing these things. Of course I don't want to see them struggle, suffer, or experience pain. But I've also accepted that eliminating these things completely is out of my hands. My job is to love them, fight for them, teach them to fight for themselves, help them believe in themselves because they know I believe in them, and show them how proud they make me.
From what Helen has said she does these very same things for her son. There have been times I've strongly disagreed with tone, specific wording, and generalizations she has made, but generally we are not so extremely different.
I truly do understand there are things worse than death. It pains me to think about the children and former preemie adults who are suffering. However, I just can't say all babies under 26 weeks should not be given a chance.
Gosh Stephanie... every time I read your comments I can't help but want to stand up and clap :)
I'm stepping out of this 'argument' but will say that I've swung in several directions - from this time last year when I was saying 'won't save under 27 weeks' to 'let's see'. At one point I agreed 100% with what Helen and her group said and now I don't.
Helen, you may not 'see it' but beth was correct in that your comments have a 'tone' to them that turns people off - you patronize and are very sarcastic in your comments. You may not intend that, but thats how its coming across and if you intend to spur constructive conversations you need to see your comments with anothers eyes. Every time you ask us for respect you fail to notice we've been asking that of you all along.
To Beth:
I think every family should be able to determine the quality of life question on their own, privately. This is not a matter, in my opinion, for the government or for the doctors (who are making a fortune on extreme care) to decide.
My mother, and several other elderly people I have known and loved, died rather than spend their last years hospitalized or undergoing dialysis or enduring what they considered burdensome treatment and conditions. Other people make different choices. This is their right, in my opinion.
Knowing what I know now about neonatology and the experimental and inherently damaging nature of neonatal care, as well as the high probability of future suffering for the survivors and their families, I would choose palliative care, rather than resuscitation and NICU care, for my own child in such a circumstance.
But I understand others who see the situation differently, who would take different risks, and would make different choices.
I am currently in Washington, DC, having just attended the 2007 Hot Topics in Neonatology Conference which featured more disturbing revelations from the world's leading neonatologists.
To quote their own words: "We don't know what we're doing" and "We don't have a clue" on such crucial basic issues as oxygen use, reflux and its treatments, NEC, blood pressure management (or even what it is they are measuring when they check BP), identification and treatment of seizures, the harmful nature of seizure treatments and much more.
What they *do* know and acknowledge is that the haphazard and largely unstudied treatments they are currently using are damaging the babies they care for.
I wish you all could have been with me at the Hot Topics in Neonatology Conference. Then we would have something *concrete* to discuss. It is frightening and unfortunate that parents are always the last to know. It's a situation I'd like to change.
However, even at this conference, there was a neonatologist couple who recently chose treatment for their extremely premature child. Most neos I know would not make such a choice, and I wouldn't, but I respect this couple's decision.
*****
To Jennifer:
I realize you, and some of the others, don't like it when I respond sarcastically to insults. And, all too often, some of you read in sarcasm where I never intended it.
However, I think sarcasm is a mild and justified response to baseless personal attacks. I reserve the right to use it as needed.
I'm not trying to be "popular" or trying to convert anyone to anything. I simply want to share, with those who want to hear it, the things I have learned from many years of research and experience.
If you *don't* want to hear these things, -- and I understand that some of you don't -- or if you simply don't like my tone, the solution is simple! Don't read or respond to my posts.
I do not come on blogs where my posts are not welcome, so avoiding me is very easy.
Finally, Jennifer, you joined NAROF about a year ago saying you didn't want your own under-26-weeker resuscitated and treated. We did our best to support you and advise you on how to get your wishes honored.
Now you seem to be saying that you have changed your mind, and I am wondering if you are still interested in remaining a NAROF member? Please let me know one way or the other. Thanks.
23w/twins mommy:
Again, great comment, I learn more and more about your position every time you post and I think you are truly striving to articulate what you might share with others in this discussion and where you differ. I appreciate your efforts to make this conversation, not just a shouting match.
I do want to clarify one thing said at the end of your eloquent post. Neither I nor to my knowledge has Helen EVER suggested that all 26 weekers should be denied rescucitation.
I think you have completely misunderstood what I've said, actually. I have never proposed a general limit and I think that would indeed be highly unethical. What I have said is that in my own case---a very specific case in fact, ie, my second pregnancy, when I already had 26 week twins that I care for daily, I would not choose rescucitation.
That said, I would not have made the same decision the first time around---indeed my 26 weekers were resuscitated. I was not willing to choose resuscitation limits that time around. I also knew almost nothing about prematurity.
I strongly believe that every parent has a right to choose for themselves. And they have the right not to be attacked for their choice or have that choice misinterpreted as a RULE that applies to everyone else.
In my case, the choice was made under a particular set of conditions that hold true for our family, our situation. I cannot and will not judge for another family's situation.
In our case, my theoretical 'decision' was made already having having 26 weeks twins, who
spent months in the NICU, and much of their first year of life in various kinds of therapies---OT, PT, alternative therapies---with whom I worked each and every day for a year on unpaid leave, and for whom the results have been nothing less than miraculous. I felt it would be unfair to them, if I were to be even more occupied with another child who needed much much more care than they did. That said, I am aware that a full term child, indeed any child, at any time for a number of reasons, may need full time care, more than we could ever imagine as parents---and I will be ready to give that and more should it ever be necessary.
But I would not willingly choose to expose my family to a high risk of this happening. But I choose to ski and do other things that people might define as unecessarily risky or dangerous----like taking premature twins to a remote Himalayan region for 3 months---and that is my choice.
So I realize that people may accept different levels of risk than I do and I fully respect this. Indeed, I myself made a different choice with my first pregnancy than I do now.
I hope this clarifies the situation.
Buddhist Mama,
I do understand your position.
You are one of the first people *I've* read whom distinguished between a set gestational age limitation and a choice based on particular, currently exisisting circumstances...in your case already having 26 week twins.
Helen has, on many occasions, stated her personal choice not to resuscitate before 26 weeks based on her research and experience with prematurity and the long term outcomes of babies <26 weeks gestation.
When I brought up the point about a baby born below 26 weeks who was clearing breathing, etc. her response was "I'm all for babies breathing without intervention." You and others have said they would choose no "heroic measures." Fine. But even my neice at 28 weeks was intubated at birth and given 24 hours on the vent to get her stabilized, and then went straight to room air. Chosing not to do that would mean allowing some babies to struggle for a short period of time simply because one didn't want heroic measures taken. That's just a point I dwell on because I have a hard time with set limits for precisely this reason.
So some people, point blank, believe in setting a gestational age resuscitation limit simply based on NICU treatment they find to be unethical and the statistics for long term outcomes for these children.
I hear why you made your decision and I'm glad you didn't have to go through with it as you are now past that mark with this pregnancy (and I'm very happy for you.)
As for "anonymous" saying people who have resuscitation limitations not bearing children...well, that is their personal opinion. There are many people who are very passionate about pregnancy and the concept of *life.* Many people feel all life should be honored regardless of any medical situation or personal choice, (I personally disagree, but there is no denying this, as seen in the abortion clinic bombers and those who speak out against euthanasia.)
I'm sure it is hurtful to hear someone have that opinion of your personal choice, just like it's a tough pill to swallow to hear people talk about how unethical NICU treatment is for <26 weekers and make judgements on their future quality of life. It's their opinion and it comes in direct conflict from what I believe and experience in my life daily, but nonetheless it is an opinion of some.
You know how you rate as a parent, and you know the thought you put into your decision. People are going to have opinions, some more controversial and bold than others. I've learned you just have to accept that (or ignore it), because at the end of the day, there is no opinion, no research, no statistic, NOTHING that interferes with my parenting or love for my children. I'm sure the same holds true for your 26 week twins and your unborn child.
To 23wtm:
I am in full agreement with Buddhist Mama that *mandating* no resuscitation below 26weeks would be wrong and unethical, particularly if parents go into the situation knowledgeably and prepared to deal with the consequences.
I (and the American Academy of Pediatrics, ACOG and others) have singled out 26 weeks as the beginning of a "gray area" based on the evidence. Below this age the majority of babies die or are left severely handicapped. by age 6, only 20% are without disability and that percentage may decline as the children get older and more disability (milder forms of autism and cognitive problems for example) can be diagnosed. I think it is safe to say that all of these children are left with some degree of prematurity related impairment. All show a unique and severe form of brain damage on MRI. Sadly, the vast majority will never live independently.
Their treatment is particularly arduous, painful, experimental and dangerous -- much more so than for babies born even slightly older (many of whom will also be handicapped, by the way -- my 29-weeker son is just one example).
But it is the combination of the burden of initial treatment for babies below 26 weeks as well as their eventual outcome that would make me refuse such care if I were ever to be in that position (unlikely at my age).
But I do not think, and have never said, *your* decision 23wtm, was "unethical."
You have stated that you were informed and that you are prepared to deal with whatever happens, and that is fine. If you and your family are happy, I am happy for you.
But resuscitation below 26 weeks is clearly an area where people of good faith can disagree. In other areas of medicine, similar degrees of uncertainty, pain, and poor prognosis would warrant decision-making.
Here, for example, is what a group of neonatologists and pediatricians recently wrote about decision making below 26 weeks:
"For most other patients (adults or older children) faced with comparable prognoses in other ICUs, their preferences, or those of their surrogates, would be the determining factors in decisions about continuing or withholding intensive intervention. This is apparently not the case in the NICU." [Singh et al. Resuscitation in the "gray zone" of viability. Pediatrics 2007;120:519-526.]
In the NICU, for financial and other reasons, most neonatologists do not allow most parents to make decisions about intensive treatment at any gestational age.
This is what I think is unethical.
It's good we had this conversation. I agree with parental choice and now have a better understanding of other's reasons for their choices.
Knowing what I know, I would still make the same choice, and others are entitled to make a different choice should they (God forbid) find themselves in a similar position to the one I was in last year.
I am currently at work on an article for a perinatal/neonatal journal on ways to improve parental informed choice in the "gray area" <26 weeks.
I would be interested in suggestions any of you have about ways to improve this process.
My own thoughts are that we need to:
1) start in the media (no more unqualified "miracle baby" stories)
2) extend this to high school biology and "family life" classes, with comprehensive coverage about what is and isn't possible, biologically, at various gestational ages
3) mandate counseling for fertility treatment couples about the risks they are taking (this counseling would not be given by anyone with a financial stake in promoting fertility treatment)
4)require handouts from OBs/ child birth instructors giving comprehensive information and options for each gestational age along the lines of "If your baby is born at X weeks, here is what s/he will be like, here are the risks and probable outcomes... here are your options..."
5) allow prenatal advance directives that give each couple a chance to discuss and think about the issues at home, on their own (away from the pressures of high-tech medicine)
6) promote a frank admission by the medical community about the highly "experimental" and highly painful and damaging nature of treatment of babies below 26 weeks
7)promote a frank discussion of the economic, marital, and health consequences for the family following the survival of an extremely preterm child
8)promote a frank admission about the resuscitation and treatment policies of each hospital -- a sort of "truth in advertising" --that would let parents "vote with their feet" and choose a hospital whose policies are more in line with their wishes
And in the NICU:
We need to promote parental participation in rounds and charting, taping of important conferences, etc. (parents should have the same understanding of what is going on as the staff!!!)
In society at large:
1)let's have universal health care (stop the financial incentives of hospitals to mandate care that pushes the margins of viability despite parental wishes)
2)and life-long follow-up and care for all NICU grads
3) as well as realistic funding for the needs of families of children who survive the NICU with handicaps
If "society" wants to require everything be done for every baby all the time, they need to help pay for the consequences. So far, "society" has been incredibly unwilling to do so.
I'd like to hear what you think.
Thanks in advance for any help you can give.
I agree with what you have outlined here Helen. I can't even think of anything to add, except perhaps a universal ethics committee who are especially trained in the area of prematurity and life support. I would like to see parents be able to meet with this ethics committee at any time with regard to treatmentof their baby. The Drs could also address this committee if they felt their efforts for a child were proving fruitless and felt a DNR order would be best. In these cases the committee should have counselors available to talk to the parents about the child's health and explain why a DNR order may be an ethical choice. Where the committee would override a parent's choice or a Dr's choice I am unclear on myself.
The only thing I would be weary about is the high school biology classes. I'm not sure exactly what you'd have in mind for the curriculum, but I would just worry about former preemies who are students in the classroom. I would not want to have a curriculum that devealed into gestational ages and resuscitation. I would also be weary of talking about the learning and brain affects out of respect for the former premature students. Of course these are things that those who are expecting should know about, but I do not think the highschool classroom would be a place to talk about specific issues preemies face. Also, it would be challenging to talk about "what is and isn't possible" without getting into conversations about the ethical issues tied with resuscitation and treatment, and I think this is an area highschool classrooms should stear clear of.
Other than that, I think these are great ideas and I hope within my lifetime they will be implemented.
I would like to see the high school biology classes focusing in greater detail on fetal development, so that students would understand, for example, how/when the blood vessels and alveoli of the lungs form and connect -- in other words when breathing becomes biologically possible.
Also I think a basic understanding of brain development is important (what is gray matter, what is white matter, what is myelin? what happens when it doesn't form properly..) and how brain development critically interacts with lung and other organ development. Eye development and ROP is a fascinating and important topic as well.
What I am suggesting a shift in emphasis to give details, news students can potentially use, that elaborate on what is already taught.
I don't think discussing ethical issues as a part of the biological curriculum is particularly relevant. I think a focus on the basic biological facts would be sufficient.
However, there are now classes in some high schools specifically on bioethics and they deal with the same issues we talk about on the blogs. I have lectured before such classes.
Also, some "family life" class teachers have told me of taking their students to visit NICUs. It apparently has a sobering effect in emphasizing the need to avoid teen pregnancy.
The posibility of having ex-preemies in the class might actually enrich the discussion. But, sadly, most preemies in the gray area of gestation are not likely to make it to such classes to begin with.
Higher gestation ex-preemies I know are fascinated by their own early development and survival. One young man in college is asking me for information on how to get his NICU charts. He is studying lung development and is intensely interested in what happened. This same young man came to me for help in making a documentary on steroids in NICU care.
Those who are experiencing academic and other problems are often helped by knowing that they are not to blame (i.e., not just being lazy). One ex-preemie adult I have been in contact with told me that seeing MRIs of preemies and reading about their brain issues has helped him "stop beating up on myself so much."
Failure to mention brain development and disorders in preterm birth *at all* would make a biology course looking at human fetal development as incomplete as not mentioning Down Syndrome when discussing genes and chromosomes or spina bifida when discussing the formation of the spinal column.
I think it has to be discussed, and I think it can be done sensitively, and with the understanding that almost every "rule" has its exceptions.
Great List Helen,
This is the kind of constructive discussion that we need more of. I look forward to the article and hope that you let us know when it gets published.
I especially like steps 3,4---mandating that fertility clinics and OBs more regularly address gestational ages and statistics on outcomes. I wonder what it will take to truly change enduring social and cultural attitudes towards birth so that we can celebrate 'normal' or natural birth, while also being aware of the higher risks that so many mothers will face. Given that 12% of all births are premature in this country---a number that has only been rising for the past decade---I think that this information about outcomes needs to be made more mainstream and more accessible to all women.
On that note I am all for a discussion of fetal development in high school biology classes. Given that many students may never take a college level biology class---which in any case, will be much more specialized and geared towards premeds---this information should be given at the high school level to reach the widest audience. And I agree with Helen's ideas about how one could introduce the material without getting too deep into the ethical issues. Lastly, given the flurry of comments over at The Preemie Experiment, I think that this discussion might help ex-preemies understand their own issues better and come to terms with them, just as they are coming to terms with many issues as budding adults in high school.
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