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.
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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.
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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,
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| Scars |
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.
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| 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.
