Viability

This post is probably going to be a bit of jumble so if you were looking for any eloquence or even words that make sense on the topic of viability, nothing to see here peeps. Keep right on going to the next blog in your list. Move along now.

Viability. A word that at once makes my heart leap and my blood run cold.

I've been having a recurring dream for about the past three or four months. At this point, I should probably mention that my dreams are not particularly opaque as a general rule. I suspect this is because my subconscious knows that I am not the sharpest tool in the shed. Thus any meaning that lurks in my dreams is usually declared loud and clear, possibly for fear that any attempt at cloaked hidden meanings or fancy schmancy symbolism will be met with blank incomprehension. For this dreamer, it is better to keep it simple and to the point or I'm just not going to get it.

In my dream, I am handed a large tray of babies. All different sizes and stages of development. Some breathing, some not. In the dream, it is vastly important that I sort these babies into order by gestational age. If I can do it correctly, the babies that are currently still moving will have some chance of medical treatment. It is an immensely frightening dream, there is a sense of menace to it. I feel like I will never succeed at my task but I am desperate to get it right, to give these smaller babies the same chances that my girls had. The dream never reaches a conclusion, I just sort and re-sort these babies endlessly, never satisfied with the order and frightened to submit them incorrectly.

I am also haunted by a memory of myself, when I was about 23 weeks pregnant. I was leaning up against the kitchen counter, my husband was cooking and I casually remarked to him that if the babies were born the following week they would have a chance of survival. I think I have written before about wanting to travel back in time, find my previous self and stab her in the eye with a sharp pencil. This scene is one of the inspirations for my time-travelling-orbit-pencil-jabbing doppelganger.

This so called 'viability day', this magical 24 weeks gestation. Just as much as of a poisonous myth as the 'just get to 12 weeks and you're safe' one.

I'm not talking about people who read here referring to viability day. Sadly, I don't think I need to tell you. All those mamas who count down to 24 weeks in possession of the facts, the chances of survival, the possibility of complications and in the full and (sadly) nonreturnable knowledge that babies do actually die.

I'm talking about people like my old self. I bandied the term viability about without having any appreciation whatsoever of what the hell I was saying.

Viability is a crucial point because it means you are in with a shot, your baby has a chance at life. I know how lucky I am to have reached that point with my last pregnancy. Please don't think that I would ever be less than get down on my knees and thanking the stars/God/Hecuba/whoever/whatever grateful. I am. I really am.

But I can't stand the way it is chucked around so freely. If any of these people who write for pregnancy websites had ever met a newborn 23-24 weeker in person, in the flesh, I would defy them to be so glib. It is not an easy sight, particularly when it is your own child. The medical procedures necessary to keep such a premature baby alive are extreme, they are not pleasant to watch or even to contemplate. There are procedures, fairly routine procedures, that the medical staff will not allow parents to be present for. And believe me, you would rather be undergoing them yourself than watching your tiny child struggling through them. I don't know how you go about intubating a baby weighing less than two pounds, I don't ever want to know if I am honest. Let alone performing the insertion of IV lines into such tiny limbs, let alone major surgeries. They are truly 'heroic measures' and, on very premature babies, they are conducted in the dark, with no guarantee of any outcome. Just a chance.

For that chance, I put one of my daughters through a great deal of pain and trauma. She could have lived for probably less than an hour with no interventions but she survived for three and a bit days with medical interventions galore.

I basically bought her hours of pain with my silence, I didn't stop her being subjected to extreme and painful procedures. Her lungs filled up with blood, her organs shut down, her brain bled. My outside bet did not pay off. She died. Even if she had lived, the doctors told us it was likely she would have been severely impaired. I remember my husband telling the doctors that we didn't care, we just wanted her. But did we really? Could we have coped? Would I have grown that carapace that I suspect would have been necessary? To fight and fight and fight for a child that only I might ever have seen the beauty of, who was never going to have a straightforward or simple life.

That is not to suggest her life would have been of less intrinsic value if she had survived than the life of a child born at term. Or of a child with no disabilities. Not at all. She was my girl and I would have stuck it out and I would have been grateful for any life that she had, whatever form it took. But it would not have been an easy one. Extreme prematurity can result in horrendous complications, complications that don't go away. I often wonder if it would have been better for her to have let her die when she was born. If I had truly loved her and not selfishly wanted her to live. But there was that chance, that small percentage that proved too irresistible to me.

For that chance, I put my other daughter through a great deal of pain and trauma. My outside bet appears to have paid off so far. It looks like I am the extremely fortunate recipient of the 100% miracle. I've heard parents of preemies that survive with severe impairments refer to 'half miracles', I don't consider Jessica one of those. No matter what lies ahead of us from here on out. But there are scars.

It is very hard to admit to this after the fact but I did ask the doctors to let Jessica die at one point. I simply couldn't fathom that the outcome could be different for my twins. I felt as though, when Georgina died, I was simply marking time until Jessica passed away as well. She had a brain hemorrhage at about three weeks old (I think, my memory of that time is a little fuzzy) and she then developed an infection and sepsis. Every day she looked sicker and in more and more distress, it seemed increasingly unlikely that she would ever be able to breathe without a ventilator. She was taking so many drugs, at such frequency, that standard NICU paperwork couldn't cope and her nurse had them all written out on a paper hand towel. The atmosphere around her incubator underwent a subtle shift, the people working on her seemed to know something that I didn't.

And again, I'm trapped in that loop. That loop that keeps me up at night after I've been woken up by my dreams of desperately sorting babies.

How could I do that? Just stand there and let it all happen.
How could I say that? Not that my pleadings made any differences at all to the medical staff but in my mind. Start. Stop. Keep going. Any means necessary. Let her be. Just let her be. Stop all of this insanity.
What sort of person am I?
What kind of mother?

Oh Georgina.

Why did I let them start? Why didn't I ask for your painful life to end sooner? If there hadn't been that cruel outside chance. I had to take it. I'm so sorry.

How could I let them stop? Why didn't I plead for another day, another hour? Perhaps you would have pulled through again if I hadn't been so quick to concede defeat. You already had. So many times when I'd been told you wouldn't.

And Jessica. I'm just so sorry my darling. I'm so, so sorry.

I didn't know. I didn't understand. I tried my best.

But it's hubris to think I had any influence on what happened. I didn't. Not really. The doctors made their decision on the basis of what was right for their patients. And their patients weren't me.
I just had to stand there and watch.
And I think I am still struggling to come to terms with that.