Fifty years ago the issue of prematurity rose to the forefront of the national conscious with the brief life of Patrick Bouvier Kennedy. Born at 35 weeks, a late-term preemie who’d likely have only the briefest of NICU stints today, the first child born to a sitting U.S. president since 1893 spurred the burgeoning field of neonatology after his death at less than two days old.

This week the New York Times published an op-ed on the ethics of the heroic life-sustaining measures now available to infants at increasingly younger gestational ages. It should not surprise you that this piece sent the preemie community into a tizzy.

The main takeaway of the article is that parents and doctors need to communicate, so that both parties are educated and aware of the options for the unplanned future they are about to embark upon.

“But of those born before 28 weeks – 30,000 of the half million babies born prematurely each year in this country – many will have serious physical, social or cognitive problems.”

The issue of understanding is crucial. No mother wants her child to be wrenched from her body before either is ready. No parent wants to see their child die at the hands of a cruel unrelenting twist of fate. But the truth is, in some of the most extreme cases, palliative care may be a preferable, albeit tremendously painful, option.

I take no issue with the tear-jerking article. I applaud the awareness it brings. So whyfor the tizzy? As is the danger with most articles available via the interwebs, many of us preemie moms read the comments. (Don’t ever read the comments. It’s usually a very poor life choice.)

This is not a pro-life or pro-choice issue. This is not a moral argument on the virtue or sin of “playing God” via fertility treatments. This is not debating the worth of a child based on his or her financial burden.

Every preemie family is woefully accustomed to the precarious dance of development. We make tradeoffs. Oxygen will keep my little one alive, but it may cause retinopathy of prematurity that can result in vision loss. Many of us have made Sophie’s Choice equivalent decisions on how to press forward. We are all human. Some times feel to us as though the nightmare will never end.

Born at 27 weeks, my sons had a relatively uneventful stay in the NICU – clocking in at 76 days. Others born later have had rougher roads. Others born earlier have had easier.

Comment:
It is time to make a social decision about this problem. We need some criteria to use such that it would be illegal to use extraordinary measures to keep a baby alive where there is a substantial probability of severe mental or physical disability. Any other policy is insane and cruel.

Let me be clear. Every preemie, every child, is unique – facing every obstacle with an individual determination that they may or may not overcome.

For us, through time, the fear of what’s next and grief over what was supposed to be/should have been is fading. But I doubt it will ever fully go away. Which in turn triggers the survivor’s guilt. We are the lucky ones – my two wimpy white boys with “no lasting effects of prematurity.”

One of my favorite preemie mom bloggers, Life with Jack, posted this morning, “FYI commenter – YES. 100 million percent, YES. If we knew that Jack would die at age 3, we would still have made the same decision. Friends, you can’t make this stuff up.”

You cannot pre-determine the worth of a child. They are a part of us – whether born after five months or 10. Given everything that needs to go perfectly right, the mere existence of life is truly a miracle.

And we cannot ever know what life will ultimately bring. Some people are stricken with cancer or ALS. Some people will be in horrific accidents that cause permanent disabilities. Would you argue their lives are suddenly worth less?

Someday, all of us – no matter what – will die.

A friend recently told me, “Life. It’s getting in the way of living.” For me, that life is the exhaustion that comes with raising two preschoolers. And I wouldn’t change a thing.