On life and death and judgment.
The internet is littered with tragic terrible stories of parents who have had to make the most difficult choices for their children.
There are stories of children so badly injured in car crashes or in horrific tragedies that parents must make the horrifying choice of discontinuing life support.
There are stories of children so riddled with terminal cancer that their parents must choose to continue traumatizing and difficult treatments or discontinue those treatments, preserving a short quality of life over the shred of a possibility that those treatments will continue a child’s life for a brief time.
One of my friends had to make a terrible decision. Her son, a twin (his sister had been stillborn) was born at 24 weeks gestation. For nearly two days, her son fought so bravely. The NICU did all they could for her son. His organs were failing, his lungs were collapsing. His prognosis was incredibly poor. She wanted so desperately to hold him without those tubes in his nose, through his head, and shoved into his paper-thin veins. After consulting with a team of doctors at the hospital, she agreed that her miracle would not come. She made the fateful decision to stop life support. I remember how she told me how quickly his poor body stopped breathing – as if he was so tired of fighting – and he was gone. Her daughter was born still and her son had now perished.
Science could not save him; medical technology could not revive him. This was true no matter how much she willed him to live, how much she wanted the drugs and the ventilator to save him. It was a tragedy. In that moment, she made the very best choice she could for her son.
Imagine if someone had chastised her for that choice. Imagine if someone had said to her You killed your son. You withheld medical treatment. You are responsible for his death.
Could you imagine?
This happens. This happens in real life with real people. There are people in this world who like to berate and belittle parents like that. There are groups – often prolife groups – who talk about those parents who have babies born in what I call “in between”. “In between” is in that sliver of time, generally between 16 and 23 weeks, where babies are born. They look like babies. They have fingers and toes and little noses and they are perfect in almost every way. You can begin to see fingernails, sometimes little spots of where hair might soon grow.
What they look like belies the truth of what they are. They are small and perfect and look just like a miniature version of an older baby, but they lack the incredibly important traits that babies born later have. The ability to breathe on their own, the ability for lungs to work and be inflated and process air, the ability to eat, the ability to regulate their body temperatures. The ability to have skin that can tolerate even the gentlest touch of another human being. Babies born “in between” don’t have those really important features, because that’s not how fetal development works and that’s not how babies grow.
And yet, there are times when these “in between” babies meet the world far too soon; a world they are not ready for and a world that isn’t designed to help them. We do not yet have the ability to simulate the womb, we cannot grow skin very well, and we cannot make lungs develop that are so small and tiny, they are almost made of feathers and can’t even be inflated. Science, whether we like it or not, simply cannot will into being things that it wants.
There are groups, such as prolife groups, who plaster these precious baby’s faces all over the internet and scream that these babies are abused and should be saved, and if they are not, then a hospital should be shut down or a doctor should be sanctioned. There is usually somewhere to email and complain. A website with a petition to sign. Even a place to donate to ‘continue the good work’. They ignore science, because those “in between” babies look so very much like babies. The tragedy is so heinous, they feel compelled into action.
There are people who will take to Facebook and scream that these babies DESERVE TO BE SAVED and receive ALL POSSIBLE MEDICAL CARE WITHOUT CEASING. because REASONS. (there are never any good, well thought out, non-emotional reasons.)
What kind of a monster would put one of those beautiful, precious “in between” babies through the kind of hell of a NICU, with needles and pain, and blood draws, and infection risk, and ventilators that could literally explode that child’s lungs and collapse them, and, before 22/23 weeks NO CHANCE OF SURVIVAL?
None.
Zero.
Zilch.
NONE.
Why? Because….because they are not worthy? No, because of science. Because we are not yet capable of saving these “in betweeners” (But if you want to see where we might be headed with this, check this out: https://www.theverge.com/2017/4/25/15421734/artificial-womb-fetus-biobag-uterus-lamb-sheep-birth-premie-preterm-infant )
Who would ever judge a parent who has sat, helplessly, with, say a 21 week child in her arms and judge their choice for their child? A choice they made with the wise counsel of doctors and specialists – all who knew that the parent who was holding that child just wanted to hear something positive?
Please, please save my baby. Please.
The answer is a deafening and heart wrenching, I’m sorry. We just can’t. There is nothing we can do.
Is the answer to “do something anyway”? Is doing something fruitless and painful to a tiny “in betweener” somehow better than cherishing the few moments, perhaps an hour or two, that you have with your child? Should one spend that time shoving tubes into noses not designed to accept tubes, or trying to ventilate lungs that cannot be ventilated? Must be defy science in an effort to say “I tried”?
It is difficult to accept the inevitable. It is difficult to accept helplessness. It is difficult to believe that medicine can only go so far. It is awful to hear the words “there is nothing we can do”.
But there are those who would judge those families. There are those who will judge those mothers. There are those who blame those parents.
The barbarian is the person who insists on hurting “in between” babies – making them suffer – just to satisfy their own histrionic fantasies of saving them.
The barbarian is one who stands in judgment of those families and the care they sought for their children.
People like that make me physically fucking ill.
People like that shouldn’t be allowed to breathe air.
People like that should not pollute the universe.
Sadly, they do.
What they should expect, however, is to be met with furious anger when they insult the parents of those who have buried their babies. Or when they plaster pictures of those babies all over social media in some vain attempt to make a poorly articulated, garbage point that is rooted in bullshit instead of facts. Because facts are hard and have big words in them and probably I can’t read half of them anyway, so here just look at this baby and scream about being open minded even as I sit and judge others.
Someone who drones on and on via social media about those poor little “in between” babies that science and medicine cannot save – NO MATTER HOW MUCH WISH YOU IT COULD – should probably expect a whole host of parents of those dead babies to be pretty fucking pissed off.
Don’t insult my sons.
Don’t insult me, under the fake umbrella of “saving babies” or “prolife” or anything else.
Don’t insult one of my good friends, who buried her 24 week son, or my other friend, who buried her boy/girl twins, or my other friend, who buried her sweet daughter – all “in betweeners”, all born outside of the bounds of medicine and science and all born to horrible, heartbreaking circumstances that if you have never stood in those shoes, just shut up because you have no idea what you are talking about.
People like that shouldn’t be allowed to populate the internet. Perhaps, with enough people like me, they will shut up and go away.