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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4 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.
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