Scared Witless of Premature Birth...and I'm not Even Pregnant

So, at work, I've been doing some research for a system we're planning for premature babies. Actually, I've probably been doing more research than they want me to because premature babies are fascinating and software testing is NOT (mostly).

I found a lot of good information by lurking in preemie parent websites, especially:
http://thepreemieexperiment.blogspot.com/

Helen Harrison, especially, frequently gives great information on new studies.

However, all this research also has my heart thumping along in a great "Run! There's a BEAR!" sort of way. See, there are these two laws: the Baby Doe law and the Born Alive law. Basically, the two laws say that you can't let infants die. Now, on the surface of things, that may seem like a good thing, but with really preemie infants, it seems a lot like they're TRYING to die. Sure, you can stave off the death of a preemie for days...or years...but when they're blind and deaf and severely retarded, with muscle contractures and constant pain, is that living? Is that "saving" them? Or is that just a very, very long death. And given that families with premature children frequently suffer bankruptcy and divorce, and siblings of preemies often suffer emotional neglect because the parents are just so focused on keeping it together and keeping the preemie alive that everything else gets put on the back burner...well, that's a lot of suffering.

I'm not even thinking about being pregnant in the next 5 years, and about 98% of babies aren't premature, but I'm still terrified of the prospect.

At 21 weeks or less (full term is 40 weeks), most hospitals will only give comfort care because no child that young has ever survived, so it would just be torturing them needlessly. At 22-24 weeks, hospitals often give the parents a choice, although this depends on the neonatologist (a type of doctor who treats sick newborns) present.

If you deliver a child at 25 weeks gestation, you have no choice about two things:
1. The child will be treated aggressively at birth.
2. The child will have problems.

http://thepreemieexperiment.blogspot.com/2007/09/resuscitation-in-gray-zone-of-viability.html
At age 19 years of age, only about 5% of infants born at 25 to 26 weekers had no problems. Death or moderate to severe handicap were the outcomes in about 85% of cases.

At 27 weeks gestational age about 15% had no problems. Slightly over 60% either died or had moderate to severe problems.

At 28 weeks gestational age about 15% had no problems. Around 60% either died or survived with moderate to severe problems.

At 29 weeks about 20% had no problems and about 50% died or had moderate to severe problems.

At 30 weeks slightly over 20% had no problems. About 45% either died or had moderate to severe problems.

At 31 weeks, about 30% had no problems. Death or moderate to severe problems were outcomes for about 40%.

IQ:
85 or above -- no problem
70 to 85 -- mild
problem
55 to 70 moderate problem
below 55 severe problem

Hearing loss in best ear:
below or equal to 25 dB -- no problem
between 25 and 55 dB moderate problem

below 55 dB severe problem

Vision:

ascertained form participants self-report although being blind or severely visually impaired was slassed as a moderate problem

Neuromotor (based on a number of tests of walking, coordination, posture, and muscle tone according to Dutch norms)

Health status focusing on vision, hearing, speech, ambulation, dexterity, and cognition, self-care, daily activities, social integration, economic self-sufficiency.)





Even at 31 weeks, 40% of the preemies had an outcome of death or moderate to severe problems. FORTY PERCENT! That's far too close to half for comfort. If you give birth at 31 weeks, you child has a 40% chance of "moderate" problems. Note that what they mean by "mild" is not necessarily what the average public means by mild. When I think of a child with mild problems, I think of a child with glasses and maybe some mild ADD--not a child with an IQ of 75 and some Cerebral Palsy. A child with moderate problems will usually not be able to live independently nor pursue the kind of career with which they could support themselves.

And 31 weeks is not an itty-bitty, teeny-tiny, "Should we save this one or not?" baby in the preemie world. 31 weeks has not been considered the limit of viability for a hundred years. There is no debate about whether it's kinder to let the 31 weekers go.

I don't want that kind of life for my child! I have a friend who's confined to a wheelchair because of severe cerebral palsy. I know it's more politically correct to say that she "uses" a wheelchair, but my friend is confined to a wheelchair. She can't use the bathroom by herself. She can't drive herself, and if she could I don't think she'd understand how to use a map--even though, to hear her talk, you'd never guess that she has mental deficits. Her mother is a wonderful person who always seems cheerful, but when she talked about hoping that my friend would walk across the stage at her high school graduation (she didn't) or that some kind of brain implant would cure her in the next 10 years (so far it hasn't), the edge of a last, desperate hope poked through the mask like the edge of a coin corroded to a razer's edge by years of suffering. I had to live with my parents for a year after I graduated from college/university, and I considered that hellish (as much as I love my parents...). My friend will probably live with her parents until they are too old to care for her. My friend's mother is afraid to put her in a group home for fear that she will be abused. It happens.

My friend is a great person, and I think she had a rich childhood and, in many ways, is having a rich adulthood. She loves some of the things she does. She is certainly treasured, and I am glad that she is here. Her life could not in any way be considered a long dying, even though I doubt that she considers it complete.

I know where the Baby Doe people are coming from, because I was pro-life when I was religious. I can certainly see the argument that people are PEOPLE dammit, even small, different people.

But now that I don't HAVE to believe that, now that I am able to pick my morality from those that surround me, I think that if I knew for certain that the child in my womb would never live independently, and I had a choice, I would choose a morphine drip, a soft blanket, and my arms for that child over tubes down their throat and the hum and beep of the Neonatal Intensive Care Unit. Alas, that choice is illegal.

If it weren't for the terrifying though of my child breathing, breathing, keeping the oxygen levels just high enough to keep him alive but not high enough to stop brain damage...for days, or forever, then I would never go to the hospital before 30 weeks.
I would bleed to death alone in the woods before I would take that child to be hooked up and poked, half-formed and in pain, in the cold, cold light of the warming lamps.