Tag Archives: Neonatology

Preemie #WotW

As I said on Friday, I’ve been pondering my premature birth a lot lately. This week I’ve been pondering it so much that I’ll choose “preemie” as my word of the week. For those who don’t know, I’m myself a preemie, not a parent of one. This brings about some unique challenges that I’ll share below.

Being a preemie, I am a statistical survivor – I “beat the odds”. Back in 1986 when I was born, it was the era of infinite possibilities for neonatology, and doctors were treating and keeping alive whoever they could. That’s changed. In 2001, I became aware of the fact that in the Netherlands, preemies born at under 25 weeks gestation, are not treated. It isn’t that the doctors here can’t – they’re probably as capable as doctors in the United States, where 23- and 24-weekers are treated and surviving regularly. Rather, doctors here believe that the quality of life of preemies born at under 25 weeks, would be too poor. My treating neonatologist, Dr. Willem Fetter, was quoted several times in newspapers as saying that sometimes he meets a former preemie and thinks: “What have we done?!”

This sentiment does not seem to be confined to the Netherlands. As Sue Hall says in For the Love of Babies, neonatologists no longer have an urgent need to save everyone they can. In the U.S., however, parents have a say.

I was born in 1986, in the era of infiinite possibilities. When, after I suffered a severe brain bleed, my parents questioned my quality of life, Dr. Fetter bluntly informed them that the staff were keeping me alive and not to interfere. I at one point read an article on abortion survivors, and it included the statistical survivors, living in areas where many abortions take place or for example those with Down Syndrome, but also the “wanted survivors”. Wanted survivors were those whose parents contemplated aborting them but ultimately didn’t. I can very strongly identify with the “wanted survivor” statement, because, even though my parents had no choice to keep me alive or not, they did eventually have a choice to raise me or not, and they chose to raise me. Wanted survivors commonly feel that they somehow need to prove their right to life, as if their parents might retroactively abort them or in my case take me off life support. This is not possible of course, but I can completely relate to this feeling.

That being said, over the past week I’ve felt a roller coaster of emotions as I read two books. One is For the Love of Babies by Sue Hall, which I reviewed on Friday. The other is Preemie Voices by Saroj Saigal. I will review this book too when I’m finished. It contains a collection of letters from former preemies who are now in their thirties. They were born between 1977 and 1982 and all weighed less than 1000 gram or 2lb 3oz. Some have disabilities and some do not. The aim of this book is to provide hope to parents of the preemies of today, but the author is also honest about the fact that some preemies still end up with severe disabilities. Of course, the book is directed at parents.

I feel validated at finally having found a book which includes the voices of adult preemies, after searching unsuccessfullly for a similar book published in like 1996 I’d heard of. Yet I still feel alone, because no-one had the experiences I did. Of course a book, unless I write it, cannot represent my perspective. Maybe I said this on the blog before, but if I ever write my autobiography, it’ll get the title of the 2004 newspaper article in which Dr. Fetter first uttered the “What have we done?!”. Its title is more optimistic: “Some former preemies will later go to university.”

The Reading Residence

Book Review: For the Love of Babies by Sue Hall

A few days ago, I stumbled across For the Love of Babies by chance and immediately wanted to purchase it. I love medical stories, and I am a former neonatal intensive care patient, so this boook seemed perfect. And it’s not been disappointing.

Synopsis

What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.

Review

In this book, Dr. Hall talks about a variety of patients. Most people do know that premature infants will spend time in the neonatal intensive care unit (NICU), but that so will babies with severe birth defects and babies born addicted to drugs, is a lesser-known fact. Although a large number of Hall’s stories are about preemies, there are also stories about babies who need to be in the NICU for other reasons, and stories about preemies who happen to aso have severe birth defects or are born addicted. The babies Hall treats range from a baby born with trisomy 18, a formerly thought to be lethal birth defect, to a baby born with Down Syndrome to a fifteen-year-old mother, and from a relatively “normal” preemie to preemies experiencing the most devastating complications. Some of the babies die, but the majority survive.

Hall includes in her stories not just the medical aspects of caring for NICU patients, but also the social and emotional aspects influencing the families and babies. For example, she ponders a mother’s reasons for using cocaine during pregnancy, leading to her child’s premature birth and ultimately death. Hall describes with caring even the bleakest scenarios. For example, one mother delivers a baby with anencephaly, a birth defect causing the baby to have virtually no brain and die shortly after birth. This mother had previously lost a baby to stillbirth who was just whisked away from her by the obstetrician. In the case of her anencephalic baby, Hall makes sure the baby and family are all as comfortable as possible and have every opportunity to love the baby until her death and even care for her afterwards.

Hall shows us not only the families’ and babies’ struggles, but also her own. For example, it’s clear that she feels disappointment with the substance-abusing mother abandoning her child shortly after he can go home, and sadness for the baby she resuscitated in the delivery room but who died of sudden infant death syndrome several months after going home.

Lastly, it is clear that Hall is very much in favor of giving parents as much control over their babies’ care as possible. I remember hearing about my own situation in which my treating neonatologist told my parents that the staff were keeping me alive and not to interfere. Usually in Hall’s stories, parents want more aggressive treatment than she recommends, sometimes with good outcomes, such as in the case of the little girl who sings to Hall at her unusually late follow-up appointmnet at four years of age.

Hall ends her book with several appendices full of advice for parents of NICU patients. I only skimmed through these, but I’m sure many parents will find the advice extremely useful.

Book Details

Title: For the Love of Babies: One Doctor’s Stories About Life in the Neonatal ICU (SmashWords edition)
Author: Sue Hall
Publisher: WorldMaker Media
Publication Date: July 2011

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