Unthinkable Thoughts

The U.K.’s Guardian recently posted an article about a 23-weeker. “Nathan was born at 23 weeks. If I’d known then what I do now, I’d have wanted him to die in my arms.” At first glance this seems like a horrible statement – who wishes death upon their child?

Alexia Pearce’s son Nathan is three years old. He remains completely oxygen dependent. He is profoundly deaf and cannot talk or walk. He is a diabetic with severe chronic lung disease, cerebral palsy and global developmental delay. And he is unlikely to live into his teen years. But he survived. Alexia gets the brief time with her son that the mothers of so many angel babies wish for. And yet, she feels tremendous guilt for allowing him to live a life of suffering.

One of my hero’s, Nurse Susan, shared,

“The hardest part of my job is continuing to help keep an infant alive when the suffering is so evident and death or long term devastation is likely. We do have miracle babies, but we don’t always know which ones those will be. At 24 weeks, there is almost always some damage done to the brain and depending on where that damage occurs, it can be minor or major!

As a parent, the thought of making a decision to “let go” is incomprehensible, but it can be the most loving, unselfish decision one may ever make! There should be no judgement or guilt placed upon a family in this position. At the same time, I’ve seen with my own eyes a couple of older kids come back to visit the NICU with minor disabilities when doctors said they would be totally disabled or die. It’s a tough world in the preemie world!”

When I was first admitted to the hospital at 22 weeks, I apprehensively asked the doctor what our chances were if the muppets were to be born right then. He just shook his head sadly. I know that 24 weeks is the currently accepted point of viability, but at that time I would have insisted on any available life-saving measures.

I was distraught, and my decision-making abilities were stuck squarely in selfish mode. At that point, you can’t sit back and rationally decide that the kindest decision will be to hold your tiny baby in your arms, cherishing every moment until their little heart ceases to beat. You want a miracle.

Pearce reminds us, “You hear about ‘miracle babies’ or ‘little fighters’ and people have such a romantic view about premature babies – ‘Oh, there’s an incubator for a little while and then they go home and everything is rosy.’ It’s not.” (You hear that Grey’s Anatomy writers?)

In Nurse Susan’s 18 years as a NICU nurse, no 22-weeker has been resuscitated. The fate of a 23-weeker depends on the attending doctor in the delivery room – who must make a split-second call on the tiny infant’s viability. How strong is their paper-thin translucent skin, are their eyes fused? How big are they? Are they fighting for life? Apparently, the parents wishes are sometimes taken into consideration – but really, who is in their right mind in such circumstances.

In the article, Dr. Bob Welch, a neonatal consultant at the Royal Shrewsbury Hospital reflected on the history of his profession, and how difficult prematurity decisions can be. “When I first started in this area in 1980, basically babies born at 28 weeks weren’t even looked at as possibly viable. Now you expect most babies born after 26 weeks to survive and survive quite well.”

The muppets are 27-weekers. I was born in 1980. Only a generation ago, my sons would not have been considered viable.

I admire Pearce for coming forward with such a taboo topic. And I wish her and her son peace.