Tag Archives: Preemies

Victim to Survivor to Thriver

Last week, one of the Friday Reflections prompts was about being a victim or a survivor. I didn’t have time to write about it then, so I will write about the topic now. I’m pretty fatigued and quite emotional today, so I hope my words make sense.

About ten years ago, I wrote on a mailing list for former preemies asking whether those born prematurely are survivors in the way that abuse survivors are. I mean, literally speaking of course we are survivors, because we survived against all odds. I was at the time still in a very early stage of figuring out my childhood and why I have always felt like a lot of my experiences were traumatic. I was beginning to discover the fact that I dissociate and learning about attachment and its dfficulties. The group owner, herself also a trauma survivor, replied that to survive means to endure hardship, so that in this sense, of course preemies – and most people with disabilities – are survivors.

As a child, I considered myself a victim of many of the experiences I endured. They were still happening, so how could I see myself as a survivor? In the same way, I can now see myself as a victim of mental illness. I don’t, of course, because no-one inflicted my mental illness on me and, besides, I don’t consider my craziness an altogether bad thing. It sucks sometimes, of course – well, most of the time it sucks. My point in saying I could now consider myself a victim of mental illness, is that it’s not over yet – I haven’t survived it as it’s ongoing.

I did survive my childhood trauma and do consider myself a survivor. Being a survivor does not mean having completely healed from your experiences, but it means having come out the other side alive literally and figuratively.

When describing the recovery process for people who endured trauma, we generally use three steps so to speak: victim, survivor and thriver. A victim is still in the midst of an experience. For instance, someone enduring domestic violence who hasn’t left the relationship yet, can be considered a victim. A survivor has escaped the direct effects of the trauma but is stil suffering from post-traumatic symptoms. A thriver has moved beyond their trauma and is living as healthy as possible a life.

The steps are not rigidly divided. For example, if a domestic abuse survivor has left their abuser but has not gone “no contact”, they can be both a victim and a survivor. Thrivership is also a continuum, where some people have no post-traumatic symptoms at all anymore and others can manage in spite of them. I will most likely always have borderline personalty disorder, which is in a way a post-traumatic condition. However, I want to someday have a meaningful life in spite of it.

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Book Review: Girl in Glass by Deanna Fei

A few months ago, I read on a preemie parent blog about the book Girl in Glass by Deanna Fei. I bought the book, but bought a few others after that one that I thought would be more interesting. As a result, I only finished this book today.

Synopsis

Deanna Fei was just five-and-a-half months pregnant when she inexplicably went into labor. Minutes later, she met her tiny baby who clung to life support inside a glass box. Fei was forced to confront terrifying questions: How to be the mother of a child she could lose at any moment. Whether her daughter
would survive another day–and whether she should. But as she watched her daughter fight for her life, Fei discovered the power of the mother-child bond at its most elemental.

A year after she brought her daughter home from the hospital, the CEO of AOL – her husband’s employer – blamed the beautiful, miraculously healthy little
girl for a cut in employee benefits and attached a price tag to her life, using a phrase, “distressed babies,” that set off a national firestorm.

Girl in Glass is the riveting story of one child’s harrowing journey and a powerful distillation of parenthood. With incandescent prose and an unflinching eye, Fei explores the value of a human life: from the spreadsheets wielded by cost-cutting executives to the insidious notions of risk surrounding modern
pregnancy; from the wondrous history of medical innovation in the care of premature infants to contemporary analyses of what their lives are worth; and finally, to the depths of her own struggle to make sense of her daughter’s arrival in the world. Above all, Girl in Glass is a luminous testament to how love takes hold when a birth defies our fundamental beliefs about how life is supposed to begin.

Review

As regular readers of my blog know, I was a preemie. My parents were concerned with my quality of life, asking some of the same questions Fei asks the doctors and herself. I cringed sometimes as I read Fei’s repetitive worrying about her daughter Mila’s health issues and their possible consequences, which sometimes led her to question whether she should be alive. At one point, Fei tells the doctors that she and her husband are not religious and do not have ethical issues with letting their child go if she faces severe disability. At times, I had a hard time reading on, because I was reminded of some of my interpretations of my parents’ reasoning on quality of life. For example, when Mila has a brain bleed, Fei repeats this over and over again: “What about her brain?”

Once Tim Armstrong, the CEO of AOL, uses Fei’s daughter as an excuse to cut employee benefits, Fei seems still not entirely accustomed to the idea that Mila is not just “generally okay” (Armstrong’s words) but is a blessing. Now I personally don’t like such terms to describe human beings either, but it seems that Fei is still a bit uncertain whether Mila should have been kept alive. This could be her post-traumatic guilt though.

However, Fei stands up for her daughter’s right to medical care. She investigates the issues surrounding health insurance and the right to medical care in the United States. Fei claims that, in every other developed country, the question would not be raised whether Mila is worth the alleged $1 million. Of course, I was reminded of the guidelines restricting treatment of premature babies to those born past 25 weeks gestation in the Netherlands. No employer may decide that certain babies aren’t worth the cost of treatment, but that doesn’t mean no such decisions are made. Similarly, while in the Netherlands employers don’t have access to health information (although they might if you buy your mandatory health insurance through an employer collective), governments do.

Fei cites a few court cases in which quality of life and the right to medical care were at stake. Unfortunately, she concludes that “obviously”, Sidney Miller, who was a preemie and now has multiple severe disabilities and is unable to walk, talk or feed herself, crosses the line of good enough quality of life. I disagree, but that’s a topic for another post. Fei uses her and other cases to discuss the idea that Mila or any other preemie should have to prove their worth. This idea, which is central to Armstrong’s reasoning and to Mila’s care, evoked a lot of emotion in me.

In general, I found Girl in Glass evoked the full spectrum of emotions in me. Mostly though, it evoked sadness and anger. Reading this book was in a way therapeutic, because Fei articulates the sentiments so well that I’ve been feeling for a long time. She also does a great job of investigating all the issues surrounding the health care system when it comes to premature babies.

Bok Details

Title: Girl in Glass: How My “Distressed Baby” Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
Author: Deanna Fei
Publisher: Bloomsbury Publishing
Publication Date: July 2015

Five Inspirational Books That I Love

This week, one of Mama’s Losin’ It’s writing prompts is “book review”. Also, a few days ago, the Blog Everyday in May prompt was “five books I love”. I don’t participate in Blog Eveyrday in May, since I only discovered it yesterday, but I love to find writing prompts. Therefore, I thought I’d combine the two and list five books I love. As it turns out, all are inspirational books.

1. Preemie Voices by Saroj Saigal (2014). This book is a collection of letters from former preemies, born between 1977 and 1982, that describe their lives now and give hope to parents of today’s premature babies and children. Many years ago, I believe Bill Silverman wrote a book of stories from former preemies titled Small Victories. I could unfortunately not get my hands on this book and am so glad I got my hands on Preemie Voices. It is so validating to know that I’m not alone on this preemie journey, even though it’s a bit annoying that the target audience is parents of today’s preemies.

2. Miracle Survivors by Tami Boehmer (2014). This is Boehmer’s second book of stories from long-term survivors who were said to have incurable cancer. I didn’t read her other book, but I think I’m going to. In Miracle Survivors Boehmer starts by listing characteristics she’s found long-term survivors of thought-to-be-incurable cancer have in common. Each contributor then tells his or her story and ends it with life lessons they’ve learned through their journey with or their overcoming of cancer. Though some people use alternative medicine and claim to have been cured by it, this is not prominently promoted. Above all, the survivors promote being on top of your own care and advocating for yourself. I feel this is an importnat message even to those who are in the healthcare system for other reasons.

3. Angels at Our Table, 2nd edition by Ann Breen (2012). This is a book of stories from parents of children (and some adults) with Williams Syndrome. People with Williams Syndrome usually have an intellectual disability and may have many health problems, but they also commonly have a very sociable personality and cute facial features. Though many families struggled with getting their children properly diagnosed and treated, particularly back when Ann Breen’s daughter was young in the 1980s, the message in the book is one of appreciation. The importance of support is also highlighted, as Ann Breen founded the Williams Syndrome Association of Ireland. I for one happen to actually like inspirational books about people wiht disabilities, so this one is a good one for me.

4. Real Families, Real Stories by Stephanie Sumulong (2014). This is a book of stories from family members of children (and again some adults) with Down Syndrome. The stories are very short, which is a bit disappointing, because i don’t get to get a deeper understanding of these families’ lives. The intention of the book is to celebrate people with Down Syndrome. For this reason, it is also sad that no adults with Down Syndrome were interviewed. However, the stories do cover many aspects of families’ lives with Down Syndrome, including prenatal diagnosis, adoption, the heart defects that commonly occur in Down Syndrome, and sibling perspectives.

5. Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries by Amy Newmark, Carolyn Roy-Bornstein and Lee Woodruff (2014). I have not yet finished this book, but so far, it seems wonderful. Having myself acquired possible brain damage shortly after birth, I find the stories of brain injury survivors somewhat relatable, though of course I did not have a life prior to brain damage. A few months ago, I read a Dutch book of stories from people who had invisible disabilities due to brain injury and I loved it. Being Chicken Soup for the Soul, the stories of course have been selected for being inspirational, but so far, it looks like many aspects of life with TBI are covered.

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Birth Story (Again!)

This week’s spin cycle prompt is “birthdays”. I have probably told what I know about my birth a dozen times, but you can’t raise enough awareness of premature birth. Or pester your readers enough about the emotional pain it inflicts.

I was born on Friday, June 27, 1986 at 12:03 AM at Dijkzigt Hospital in Rotterdam, Netherlands. I had my first ambulance ride right that night when they took me to Sophia Children's Hospital. Both hospitals are now part of Erasmus Medical Center, the university hospital in Rotterdam. Sophia Children's is the largest and oldest children's hospital in the Netherlands, having celebrated its 150th birthday a few years back.

I was estimated to be born at 26 weeks and four days gestation. When I was fifteen, I calculated what should’ve been my due date based on the day I was conceived (which my parents knew precisely because it was my father’s birthday). I then figured my gestational age should’ve been 25 weeks and two days. This weighed heavily on me because my mother had told me that, back then, they didn’t treat babies born under 26 weeks gestation. Now I realize that estimated due dates are just that: estimates. You can’t determine a baby’s gestational age just by looking at it, and the date the baby was conceived ony loosely predicts the date the mother last menstruated. Furthermore, I’ve never been able to find information on guidelines for treating babies in 1986. Now, doctors do have strict guidelines by which they don’t usually treat babies born under 25 weeks gestation. See my reasoning above for why this is nonsensical.

I spent 94 days in the hospital, of which I spent roughly six weeks on the ventilator. I went home on my supposed due date, September 29. While in the hospital, I had all three problems now seen as predictors of poor outcome: a lung infection, retinopathy of prematurity (the eye condition from which I’m now blind) and probably a brain bleed leading to hydrocephalus. The ROP and hydrocephalus were both discovered when I was five months old.

Each year around my birthday, my parents tell stories of how they walked down Gordelweg, where Sophia Children’s was located at the time, from the metro station to the hospital. In Rotterdam, cars are more of a hindrance than a help, so they didn’t have one. I don’t remember ever walking that route because I was discharged from follow-up when I was three. Now, I tell this story more often on my blog than my parents tell it to me.

As I’ve mentioned a couple of times on this blog, my birth story still impacts me. Having become more laid-back about my due date has helped. When I was a teen, I truly thought I’d be retroactively taken off life support for being a poor outcome. I still think so at times. Sometimes, I wonder what it takes to heal the psychological pain that I feel the circumstances surrounding my birth inflicted.

Celebrating Myself #PreemieBlessings14

November, in the United Stats, is prematurity awareness month. In honor of preemies and prematurity awarness month, Michelle over at Preemie Blessings has started a challenge. Her first challenge is to answer on one of your social media networks who you are celebrating during prematurity awareness month. Now most preemie bloggers are parents so will mention their children. I’m not a parent, but a preemie myself, and I am just going to be bold and celebrate my very own self!

November is a tough month for me usually. It means adjusting to the end of daylight saving time, the start of colder weather and, well, fall and winter blues. November 2 also marks the anniversary of my first suicide note in 2001 and my suicidal crisis in 2007 which led to my psychiatric institutionalization. I know what it is like to feel like I no longer want to live, but I also know what it is like to feel like a surviovr, and to celebrate it!

I was born at somewhere between 25 and 26 weeks gestation in June of 1986. During my three months in neonatal care, I endured various complications. From one of them, retinopathy of prematurity, I’ve been legally blind all my life and am now totally blind. The others are a mystery in some ways. I had a possible brain bleed, but it wasn’t suspected until hydrocephalus was diagnosed in November. You know, they didn’t do CT-scans or MRIs routinely back then. I also had a lung infection when I was still in the NICU and RSV when I’d been home a few months, but not sure whether I had the A’s and B’s (apnea and bradycardia) that so many preemie parents worry about.

I once read this inaugural speech by a professor of neonatology or something, who said that lung problems, retinopathy of prematurity and brain bleeds are the three conditions that predict poor outcome in preemies. I don’t know whether this professor drew the connection, but I did draw one between poor outcome and “quality of life” and further worried that babies with all three conditions, like myself, should not be allowed to survive.

I still struggle with the thought that I shouldn’t have survived and with suicidal ideation at times. Life is tough sometimes, especially now that I’m worrying about the upcoming cuts to care that will take effect in 2015. I worry that I’ll be left to my own resources, like I was in 2007, and that I will fall into a crisis again. This worry has almost led to a mini-crisis already.

But let’s move on to the positive. I celebrate myself and my life, after all. Here are some things that make my life worth living.


  • Being married to my wonderful husband.

  • The support from people on social networking sites.

  • Being able to read Preemie Blessings and so many other lovely blogs.

  • The Internet in general.

  • Being able to express myself in writing.

  • My creativity and the help I get at day activities to express it.

  • My faith.


Today, I can say I’m glad to be alive. I say this with a bit of a knot in my throat, but I say it nonetheless.

“Preemie Syndrome”

As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.

I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.

So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:


  • Motor deficits, often not diagnosed as cerebral palsy. Developmental coordination disorder, “clumsy child syndrome”, fine and gross motor delays. Hypotonia or hypertonia.

  • Cognitive impairments: learning disabilities or low IQ. Difficulty thinking logically or dealing with abstractions, literal-mindedness, inability to comprehend or follow simple directions, sometimes good rote memory, short-term memory loss. Test scores may be higher than actual functioning. Inconsistent performance.

  • Speech problems./LI>
  • Feeding problems: reflux and/or failure to thrive.

  • Dental problems: missing teeth, need for braces, high palate.

  • Low vision due to either retinopathy of prematurity (ROP) or cortical visual impairment.

  • Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, “autistic traits”.

  • Social dysfunction: few or no friends, may not recognize social cues, oblivious to social space, low self-esteem.

  • Behavioral problems: immaturity, self-regulation problems, poor impulse control, intense need for order and routine, stereotypic (self-stimulatory) or self-injurious behaviours, disorganized behavior, inability to prioritize.

  • Attention deficit (hyperactivity) disorder (ADD/ADHD) or similar traits.

  • Sensory issues: sensory integration dysfunciton, sensitivity to noise, increased startle reaction, “tactile defensiveness”, strong aversion to certain tastes or textures.

  • Depression or bipolar disorder.

  • Anxiety disorders or obsessive-compulsive disorder (OCD). Peculiar phobias.

  • Reactive attachment disorder (RAD) or attachment issues.

  • Precocious puberty.


I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.

Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.

I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.

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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Benefits of Mutual Support Between Disabled Adults and Special Needs Parents

On the Preemie Babies 101 blog, Laura Maikata wrote an interesting post on surviving the post-NICU roller coaster for parents of preemies. Indeed, premature birth affects children long beyond the NICU, sometimes lifelong. Getting a new diagnosis, facing a new issue for your child is hard. So is the sometimes long time that passes between you as the parent noticing something and getting the answers to whether it’s an issue to be worried about and if so, what the diagnosis is.

It is important at all stages of life as a preemie parent to get support. When your baby is still in neonatal intensive care, this is seen as obvious, but there is little support out there for parents of older preemies. There is the PREEMIE-CHILD E-mail list and accompanying website, but that’s about it.

I wrote a comment on Laura’s post on the importance of support from people further along on their journey. This includes parents of older children with your child’s diagnosis or parents of older preemies, but I wanted to make clear it includes adults with special needs or former preemie adults too.>/P>

As a former preemie and adult with disabilities, I have found that I have been able to help some parents of special needs or preemie children along their joureny. I am not very knwoledgeable, but i can share my experiences and give parents an idea of what it’s like growing up as a former preemie. I can also share, if I know it, what helped me overcome certain struggles that parents are now facing with their children.

On the other hand, I too have been able to gain support from parents of special needs or preemie children. They have the benefit of their child’s doctors and specialists knowing the latest research on their conditions, and strategies that work for a child with my condition, may also work for me.

I remember in 2003 being part of a group for parents of blind children. The group also consisted of a few blind adults. I was the only blind teen on the list I believe. At the time, I was mostly on the receivign end of support, and the parents and blind adults at the time encouraged me to go to blindness rehab (though if they’d known how low the expectations of rehab were, they’d not have liked it). Now that I’m in my late twenties and have gained a fair amount of knowledge on my disabilities, I am not on that particular list anyore, but am on others. I have, for example, joined a group for parents of blind/autistic children, and though I was more capable growing up than many of these children are, I can still help in some ways.

There is often an attitude in the autism community that adults with autism cannot speak on behalf of children with autism. I understand, if for no other reason then because parents are the legal spokespeople for children autistic or not. But I don’t understand that autistic adults cannot provide any sort of perspective for parents of autistic kids. I think both parents and adults can learn from each other, and it isn’t that one group should speak for the other.

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.