Thursday, July 4, 2013

Viability and resuscitation - the difficult case of the 23 weeker

There is a reason the dates on this blog don't match up.  I tried to write this for yesterday. I couldn't get it done. I wanted this to be said, but didn't think I could say it well. This is a hard subject, and at this point I'm not sure that spending another year on it will make it any better, so I'll give this my best go.
A year ago today, July 3, 2013, I was just learning what each week of pregnancy meant.  I was going beyond the "24 weeks marks viability" rule of thumb and trying to find stories of what delivery before that could mean.

Every blog I came across gave me hope - at first.  The baby was born at less than 24 weeks. The baby was small.  The baby had lived a week!  Then another!  But then, less than three months later, and the baby blog ended with bereavement.  Do a search for "micro preemie clothes" and you'll find more places to buy baby funeral suits and gowns than onsies or sleepers.

In the end I decided this baby needed to make it to twenty eight weeks. Twenty four weeks is the time at which a baby has a fifty percent chance of survival, and that was too tenuous for me. Before twenty four doctors wonder if it is worth the pain to the parents and the child to resuscitate, hope for life, and then lose the child weeks or months later, with the child only having lived a monitor and intubated life, sometimes without the parents being able to even hold the fragile being until the last moments. Risk of life-long disability is high.

Perhaps comfort care, letting the baby spend the time in mom and dad's arms until baby passes peacefully, is, in the case of these earliest micro-preemies, the most humane course to take. In the end, if the hospital is equipped for babies born before 24 weeks, the doctors give total choice to the parents.  They explain the odds, they explain the risks for long-term disability, and then they let us choose.

When we asked directly our NICU doctor, in the pre-delivery consult, said most -- 80 to 90 percent of parents of 23 weekers that he sees -- choose to resuscitate. That means some choose comfort care instead.  And while our NICU was prepared to work with 23 weekers, many NICUs are not.Thus, in other areas, we may not have been given a choice about resuscitation. Even a decade ago in our area letting the one pound baby go would have been the only course of action.


Today July 3, 2013  a colleague received this book (Better Never to Have Been: The Harm of Coming into Existence by David Benatar) in the mail.  A well-argued work that says maybe it'd be best if we hadn't been born.  Thus, we wouldn't have ever been harmed. Here are a few excerpts from the introduction:

"Although the good things in one's life make one's life go better than it otherwise would have gone, one could not have been deprived by their absence if one had not existed. Those who never exist cannot be deprived. However, by coming into existence one does suffer quite serious harms that could not have befallen one had one not come into existence." (1).

For biological and psychological reasons we overestimate how good life is and so think that life is better than non-life. While life might not be better or worse than non-existence, coming into existence, he argues, is always bad. Thus, we are all unlucky.

"It is curious that while good people go to great lengths to spare their children from suffering, few of them seem to notice that the one (and only) guaranteed way to prevent all the suffering of their children is not to bring those children into existence in the first place" (6).

Get it?

We started discussing the book.  "So, my decision of a year ago would have been an easy one for him to make," I said.

"Well, probably not," my coworker replied, "because at that point, your baby was viable, so he might have argued that more harm would be done if he weren't resuscitated than if he were."

"Except that he wasn't viable," I said.

Alright, clearly he WAS "viable," (able to live outside the womb), because he lived.  But he was not yet to 24 weeks -- the cut-off point for medical professionals and the law.  So to this author -- I think he would have said don't save a baby at 23 weeks gestation. He doesn't quite exist yet, so let's keep it that way.  

Moreover, while all people are likely to have more harm done as a result of being born than not being born, given that a severely premature baby is likely to suffer even MORE harm than a term baby, and with less than 50% chance of survival, even if everything is done, you are sending the child to certain misery with only slim chance of experiencing anything but pain.

I have run across a handful of people on the internet that argue that we (or people like us) were making a selfish choice to resuscitate because we didn't want to lose our son. "One can never have a child for that child's sake" Benatar states (p. 2), so we are self-interested parties.

A parent of a 23 weeker brings their child into existence at the cusp of possibility knowing that the road ahead will be painful. The chances, as best as they are now known, are laid out for us. Most of us parents of micro-preemies are choosing to give a chance of life to our child, knowing that he or she may be disabled and knowing that even if all our dreams for our child are fulfilled, our lives will be severely disrupted as a result of his or her prematurity.

Our family is one of the "best case" scenarios, and a year out we are still struggling to figure out how to make all pieces of our life work.  One could argue that even so we were self-interested in our decision last year. And while it is true that we did not want to grieve his loss (because to us he did exist), his continued existence teaches us selflessness in a way his nonexistence couldn't have.  His life now is more joy than pain, and as he does not remember the surgeries and pokes, I contend that his existence is not so bad after all.

I know I cannot convince Benatar of my decision, but let's put that aside.

I am writing this post to give voice to the many sides of the micro-preemie question.  Benatar's position refers to all existence and thus is extreme to most people, but it gets at utilitarian arguments. End of life decisions are hard no matter when they come. They are very hard when we have to make them at the beginning.

Again, the choice to resuscitate a 23 weeker isn't a clear-cut choice.  Most of us parents are optimistic fools and chose to say "resuscitate," but the odds are against these kids. I have seen one who, while admitting she loved her micro-preemie, has questioned that choice to resuscitate. Most of us give the kids a fighting chance, and few of us regret it. But it's important to point out the difficulty and complexity of that choice.

While I want this blog to give hope, while I want others to find that story of the 23 weeker who survived (because a year ago I could not) I also want to be honest.

The road is hard.  The path is uncertain. Please, friends, family and strangers, use this blog to offer hope, but don't use it as "proof" that everything will be okay. Only one thing is certain: it will be very hard. No matter what choice a parent makes at the beginning, no matter what the road ahead looks like for the preemie, difficulty is a near certainty. It is also nearly certain that your micro-preemie's path will be unlike any other preemie. You simply can't predict.

So, with all the odds against these littlest ones, is it worth it?  In my case, I say "yes."

Unlike David Benatar, I think even a difficult road is better than no road at all. This comes, I am sure, from my religious convictions. Humans are in the image of God no matter their shape, size or ability. It is sometimes hard. For many people it is harder than not. That said, we are not here to be pleasure seekers. Non-existence, on the other hand, means that one is formless. So a utilitarian argument of this sort falls on deaf ears here.

Not that I am not a bit utilitarian, if I'm honest with myself.  There is a point at which it makes sense to sign a DNR (do not resuscitate) order, but to me that point is far from the point we were at last year. DNR is a great option for terminal disease at the end of life, when it is clear there is only one possible outcome. Jonathan's life was just beginning, and the path forward was yet unclear. Giving my child a chance was worth the risk to him and us of a nearly guaranteed life of greater pain. As this story unfolds, you'll see that despite the greater pain, we have also been given greater joy because of this little guy. As he grows, we too grow. This is a good life. And in the end,

It is interesting that Better Never to Have Been comes across my desk a year and eight surgeries after we made the choice to give JAM a chance to be. The decision we made has brought unexpected stress and suffering, but we do not regret that decision for a moment. Happiness studies show that nearly all babies, not just preemies bring more stress and unhappiness to parents lives than joy.  So why are any of us having children?  My children may not make me happier, but they do make me better.

First scar (under shoulder) - 9 months after surgery
 I am extremely grateful that Jonathan is not likely to be emotionally scarred from the pain of the past year.  While his physical scars will grow with him, even those scars are starting to fade.


  1. Am a grandparent of a 23weeker and they live with me . I Love her but her future and life will be miserable and no quality so I agree that just give the parents time with the child and let them grieve. May be comforting for you to have him there.......but is his life good??

    1. I do not know your granddaughters actual condition but want to say just because she will be severely diabled for her entire life does not mean she has no quality of life and be miserable until the day comes when she passes away. I am not a mother or grandma to a 23 weeker however I am the best friend of a 23 weeker. While she was a spastic quadraplegic cerebral palsy, she could not speak, she could not walk, she could not eat unless it was put through her feeding tube. She was either in her bed, in her wheelchair, or regular living room furniture and could not move herself at all well she had a little movement in her arms but not useful movements. However she would smile and coo andjust light up any room she was in. I met her at age 9 and we quickly became inseperable, I was taught how to do her tube feeds and learned how to transfer her if I absolutly had to, and we would leave her house in the morning and go outside and play yes the way we played was drastically different from your average 9 year olds. We would be out until it was dark and then I would take her home and we would have sleepovers and not just at her house she would also sleep oveer at my house. As we got older and had more privilages we would go shopping together. She eventually moved to another state and we were then seperated, however if you think because she is so greatly disabled that she didnt even know who I was, your thinking is 100% wrong because 10+ years went by before I actually saw her again and her face lit up with the biggest smile and she cooed just as big. She did end up passing away at the age of 29 however it was not related to her CP or a complication of being a micro preemie, she ended up with pneumonia and was admitted to the hospital where she then picked up another pneumonia from a different bacteria and her system just couldnt fight them both off and she needed to be put on a ventulater, but her mom opted to not do anything invasive and had her placed on BiPAP instead and let nature takes its course, and again if you dont believe she doesnt remember who her friends are you again are wrong,I was flown out to WA to say my good byes the night before my flight it was looking like I was going to be too late however her mom told her I was on my way to see her and the next morning when I was getting on my first plane she became much more alert and stayed that way all day waiting for me to get there and at 1am I got to the hospital and she moved her head towards my face and smiled at me. We spent a good two hours just her and I and then she knew it was ok to go. So your future might look bleak at this very moment but you have no idea if your granddaughter is going to live a miserable life with no quality, you really should be a lot more positive for her sake.

  2. Anonymous,
    Thank you for your post. Our son is perhaps an unusual case. His life is very good. He is on track with social/emotional and problem-solving skills as well as fine-motor skills, and he will catch up with gross motor (he is only slightly behind due to multiple gut surgeries). He may wear glasses, have asthma, and perhaps be hyposensitive when he's older -- but that IS a good life.

    That said, at the moment of choice for us (see here: we didn't think about THIS sort of baby. We imagined a perhaps blind, perhaps deaf child. Or a non-verbal child with severe cerebral palsy.

    I am also rare. I've worked with non-verbal, non-ambulatory adults. These were the individuals I had in my head when we said "resuscitate." To us, that sort of life would still be worth it.

    And when we imagined a child like that, we still thought "This would be a good life. That would be better than passing."

    That said, there is a reason this is a tough choice to make. When a parent chooses to resuscitate, they must be willing to accept the wide range of abilities (or disabilities) that come with that choice. It is not an easy road.

    THANK YOU for adding your perspective to the discussion. And thank you for the care and love you give to your granddaughter, so that she can enjoy life as fully as is possible for her.

    1. Harder than accepting the wide range of abilities -- a parent must be willing to accept that their child may spend their short life on breathing supports with little human contact and STILL not make it. This, I think, was the hardest part for us -- turning our child over to NICU staff and hoping, praying, that we'd have some sort of a chance to know him - knowing he might not be there in the morning.

      As for the rest of it, the disabilities - that wasn't as big of a deal to us. I have high optimistic hopes that most of humanity sees intrinsic value in life, "even" life with multiple profound disabilities. I am grateful for the people I have known that have gently tutored me and helped me understand through their example that I am an intellectual and physical elitist, and that this is bad. I had, without realizing it, come to believe that unless someone DOES something with one's life, something profound and world-changing, they are not worth much. That one must strive to write, read, run, swim, or do SOMETHING better than everyone else. That underlying mindset had bound me.

      The people in my life with significant disabilities opened my eyes to a different way of looking at the world, helped me strip my concept of humanity to its core and reframe and reform it from the bottom up. For that I am forever grateful.


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