Tag Archives: Preemie

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

Reflections on NICU Trauma

My birthday is coming up on Friday. It was another Friday 28 years ago that I was born at somewhere around 26 weeks gestation. The doctors determined my gestational age to be 26 weeks four days based on what my mother told them and whatever measurements they took. Based on my date of conception, my gestational age may’ve been as young as 25 weeks two days. When I was a teen, this “mistake” led to extreme turmoil, for I thought babies before 26 weeks gestation were at the time not treated. The reality of my birth story is that the neonatologist, now a proponent of leaving micropreemies to die, informed my parents that they were simply keeping me alive and not to interfere.

Times have changed since 1986. For one thing, more is known about the effects of premature birth on health and development. For another, more attention is paid to parents’ and babies’ mental health. This doesn’t mean that PTSD doesn’t rear its ugly head at times. Today, I read a story by a mother of a 23-weeker, who clearly says it does. Then again, 28 years ago PTSD was unheard of in NICU parents. Attachment issues were unheard of in preemies. Today, we know better.

I know better. It isn’t my job to diagnose my parents, but they certainly experienced the effects the Mom in the above story describes. Time and time again, they’d re-experience the memories surrounding my birth. They shared with me, and that was mostly good. Some of it was not so good. Knowing my parents had questioned my quality of life and whether I should be kept alive at all, well, that certainly left some scars on my soul.

I learned about the possibility of the NICU experience being traumatic to the baby from another former preemie in like 2006. She was born in the 1970s, and much had changed between than and the mid-80s. Still, when I checked out the “About” page for the above blog, I was astonished to read that Jax, born in 2012, wasn’t first held till he was nearly two weeks old. I probably didn’t have it any better. I don’t mean this to whine, but it is a possible explanation, along with others, for my severe attachment issues. I know that attachment disorders can’t be diagnosed unless there is evidence of pathological care, such as abuse or neglect. The NICU isn’t pathological, but it most certainly is not a normal environment to spend the last three months of your would-have-been-preborn life or the first three months of your life out in the world in.