Tag Archives: Premature Birth

Diagnonsense Once Again

A few weeks ago, I wrote about my disappointment at not finding the right day activities or home support. Unfortunately, it didn’t end there. Over the past few weeks, I have been finding out about the details of my changing diagnosis. Or rather, diagnonsense, as it’s all extremely odd. Let me explain.

In late June, my psychologist pulled me out of day activities to inform me she had changed my descriptive diagnosis. A descriptive diagnosis is a brief description of what’s wrong with the patient, which should be a little more personalized than the patient’s DSM-IV (we still use DSM-IV here, which is weird enough) classification. Her descriptive diagnosis was mostly okay’ish, with one exception: she said that autism as well as dissociative identity disorder and PTSD had been previously diagnosed, but these weren’t too clear. At first, I thought she meant just the DID/PTSD wasn’t clear. I was wrong. She had, in fact, removed autism from my diagnosis.

Now I have been assessed for autism three times in the past and was diagnosed with it all these three times. There were some questions as to whether some of my problems are due to blindness, but overall it was clear that there was more that was going on with me and this “more” is most likely somewhere along the autism spectrum.

I however was also born prematurely and had a brain bleed leading to hydrocephalus (“water-on-the-brain”) as a baby. This was known to all people who previously diagnosed me as autistic and my first diagnostician even added hydrocephalus to axis III (for physical health problems) of my DSM-IV classification. This was when I was in outpatient treatment. For some reason, hydrocephalus was never on axis III while I was hospitalized. It still isn’t. Yet my psychologist says she cannot diagnose autism because of the complications associatedd with my premature birth. Never mind that there is an enormous amount of literature showing that former preemies and children with infantile hydrocephalus are more likely to be autistic than those without these experiences.

Now like I said, my psychologist didn’t add hydrocephalus, neonatal brain injury or anything like that to my diagnosis. She did briefly mention it in my descriptive diagnosis, but it’s your DSM-IV diagnosis which determines your “diagnosis-treatment combination”, ie. what care you’ll get. My DSM-IV classification now lists borderline personality disorder as my diagnosis. Oh and adjustment disorder, which my psychologist says explains why I can’t handle changing situations. It doesn’t. An adjustment disorder is an extreme, disabling response to an identified stressor. For example, when I lived independently and this caused me to land in crisis, I was diagnosed with adjustment disorder to justify my hospitalization. Back then, adjustment disorder was a justified cause for care under the basic (mandatory) insurance pacakage. It no longer is. Long story short: essentially, I’m stuck with just a borderline personality disorder diagnosis to base my care on. It doesn’t seem to matter that BPD is an adult-onset disorder and I’ve had problems all my life. It doesn’t seem to matter that BPD doesn’t explain my sensory and cognitive overload. Oh wait, maybe that’s just me trying to manipulate people into not exercising their right to overload me.

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.

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

Seven Things

Last week, one of Friday Reflections’ prompts was to list seven things about yourself. I was at my parents’ for the week-end, where the desk I had my computer on was uncomfortably high. I also I had a hard time concentrating with my parents, husband, sister and her boyfriend in the room. For this reason, I didn’t write a post this week-end. (On Friday, I attended a concert so didn’t have the time to blog at all.) I’m still not very inspired today, so I just choose to use last Friday’s prompt. Here are seven keywords that describe me.

1. Preemie. Last week was World Prematurity Day, so I just got to choose “preemie” as my first descriptive word. I was born a little over three months premature in 1986. I was very lucky to have been born in the city of what I believe is the oldest children’s hospital of the Netherlands and even luckier that the Netherlands is a developed country with good health care. Read this article on Preemie Babies 101 to find out more about preemie care in developing countries. This made me realize how fortunate I am.

2. Intelligent. This is the first thing my parents would say if they had to describe me, or at least it was when I grew up. When I was twelve, my verbal IQ was measured at 154 (my performance IQ cannot be measured because I’m blind). This means I may be intellectually gifted. At least, Mensa considers a verbal IQ of over 130 to suffice for membership if you’re blind. Yes, I did at one point consider joining Mensa.

3. Blind. Okay, let’s start the collection of disability labels here. I am blind. I have always been legally blind and have been practically totally blind since age eighteen, although I still keep noticing that my vision can get better or worse. I notice even tiny changes that are not measureable by ophthalmologists. I am clasified as having light perception only and have been classfied as such ever since 2004, but I still use the tiny bit of vision I have for orientation sometimes. Maybe I shouldn’t, but I can’t shut it off.

4. Autistic. And possibly otherwise neurodiverse. I wasn’t diagnosed with autism till age twenty but suspected it from age twelve on. My parents didn’t want to hear of it, so after they voiced thir strong disapproval of my “hypochondriasis”, I pretended I was completely neurotypical. I failed, of course. Even though my autism diagnosis has been questioned a few times, most professionals are sure that I’m not neurotypical.

5. Mentally ill. After all, I have a mental health diagnosis. I am not one of those neurodiversity activists who believe that a psychiatric disorder is completely separate from a neurodevelopmental disorder. That distinction is, in my opinion, entirely political. I however do sometimes wish I didn’t have the diagnosis of borderline personality disorder, but that’s because BPD is one of the more stigmatized mental health diagnoses.

6. Blogger. I have been a blogger since 2007 (or 2002, if you count my online diaries that have been republished on my old blog). I don’t like to be associated with my old blogs though. I have this idea in my mind that I need to blog regularly or i need to start over and not associate with my old blog at all. It’s really surprising that this blog has been active for over two years, because I’ve started and restarted my Dutch blogs half a dozen times in the last year.

7. Wife. I don’t like this word, although I do like to refer to my husband as such. It’s probably because, in Dutch, the word “wijf”, which sounds like “wife”, is an insult for a woman. I always feel that the word “wife” sounds slightly submissive. However, I like being my husband’s wife.

Letter to My Baby Self

A few weeks ago, I discovered the Tuesday at Ten linky. This is a weekly linky that starts on Tuesdays at 10:00 AM, but you can link up posts throughout the week. Unfortunately, I was just a bit too late for that week’s prompt and the one the week after didn’t appeal to me. This week’s prompt is “If I could write a letter to the past me”. Having written many letters to myself in the past or future, you’d think I didn’t feel inspired to write one again. You’re wrong. I love writing letters that reflect on my life experience and the wisdom I’ve gained from it.

The challenging bit is to myself at what age I’d like to write a letter. I wrote a letter to my twelve-year-old self already. I have written a poem for my baby self as well. Let me make a twist on these two previous posts and write a letter to my baby self. She wouldn’t be able to read it, but isn’t that the case with any letter that requires time travel to be delivered?

Dear baby self,

Sometimes, in my dreams or daydreams, I see you. You were just born, June 27, 1986. The name tag on your incubator side says “baby”, since Mom and Dad didn’t have the time to think of a name before Mom went into premature labor. That’s what they’ve told me.

Let me tell you who I am. I am you, but older. I am 29-years-old now. Isn’t that a big number? Ha!

As you lie there in the incubator, Tigger the stuffed tiger by your side, I want to remind you that you are cherished. I don’t have Tigger now – he is probably at Mom and Dad’s if he hasn’t long been thrown away -, but I do have two other stuffed animals. One is Wally, the whale I got when I got home from the neonatal unit. Wally will forever be a reminder that I survived neonatology. I am here to write to you, because YOU survived.

The other one is an unnamed stuffed cat. I got it at an age when I thought I was too old for stuffed animals. I was almost nineteen and graduated from high school. The cat will forever be a reminder that I am now an adult, old enough to make my own decisions, and I don’t have to live up to anyone’s expectations but my own. You will still have to fight for your life. You will feel later on that you had to fight for so much more than just life. Whether this feeling is justified, I do not know, but you, or rather I can let go of it now.

You are now a grown woman. I remember, at the time I graduated from high school and got the stuffed cat, that this idea scared me. I feared being grown-up meant needing to prove myself to my family without my family’s ongoing support. In truth, being grown-up means letting go of the idea of having to prove yourself to anyone but you. Also, it doesn’t mean you won’t be supported anymore. I now have my husband and still have my family at a distance, after all.

Above all, I want to remind you, as well as myself, that you and i are good enough. We’ve proven ourselves by surviving so far and making it to 29. I hope you realize that you are loved.

Astrid

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.

Mama’s Losin’ It

Post Comment Love
You Baby Me Mummy
Found Love. Now What?

Night #WotW

It’s another sleepless night. Tonight, I’m thinking over whether to transfer the two domains I own, which are both registered with different providers, to one. A third one, that is, because both of my current providers have problems. The one I use for this blog is fine as long as I don’t need to change anything, but it requires a shitload of information if you haven’t memorized your password and you do want to make changes.

The one I use for my E-mail, I just came up with like four reasons to transfer it:


  1. I don’t need 7500MB of space and 75GB of data for just my E-mail and I don’t want to pay for it either. While the hosting isn’t terribly expensive for what they offer, the 7500MB/75GB package is their only product. I could pay a third of the price for a small package at where I want to move to.

  2. Either they or I screwed up the control panel. Not that I did anything to it, but half of the functions that are supposed to be in there, including installing applications, are hidden far away. Their application installer is rather unusual too, so I keep getting errors when trying to install apps. Could be because I’ve been playing with apps through FTP (because again the installer wouldn’t work) when I still used FTP. Which, by the way, I won’t be using again unless anyone can recommend a good FTP client that isn’t loaded with junkware. I just screwed up my computer with a used-to-be-trusted client. But I digress. The hosting provider I want to move to, has INstallatron as their installer, which is basically standard stuff. So if I want to build a site anyway, I could.

  3. I keep getting certification errors when trying to log in to DirectAdmin. This could be normal, but I don’t trust this.

  4. Most importantly for my current usage of this package, I hate their extensive spam filter. It’s a spam filter that sits before the server, so you don’t get to even see your spam messages if you want to. This has led to E-mail from several forums and social networking sites not getting through. I could disalble the thing as it isn’t a standard feature, but their basic spam filter is really hard to work. I don’t know of course whether another provider has a better spam filter. What I’d look for is something where you can just click a button on an E-mail message to mark it as spam and it learns this way.

Then this whole thought led me to thinking of self-hosting my blog too. I don’t know whether that’d be much harder than working WordPress.com, and in fact I have some experience self-hosting a blog that went pretty smoothly (though no-one ever visited and I only had it for like a week or two). Both the good thing and the bad thing is that it allows for more customization. It’s good because, if it works, I can set up more functionality and usability. It’s bad because, if it doesn’t work, I might (or more likely will) just screw up my blog. At least this way I will avoid getting “you should self-host” as an answer to all my WordPress questions in blogging groups. As a side note, even if I don’t end up choosing to self-host, I may want to move my domain name because at my current provider I pay like E22,50 a year whereas it’s E7,99 elsewhere.

I don’t know why these thoughts keep me awake. Last Wednesday, it was trying to find a good private journaling site after all software I tried, even the one that could’ve been great, failed to meet my expectations. I haven’t yet made up my mind on that one.

Technology isn’t the only thing keeping me up at night. Another thing is just a terribly melancholic mood. This evening, I joined some Dutch preemie parent groups. The members have been very supportive, but I keep rewriting my words just to make sure I don’t sound like I’m bashing my parents. Apparently I did with last Monday’s post. After writing that one, I also couldn’t sleep much at all.

As a result of both the technological and emotional navel-gazing, my circadian rythm has been pretty non-circadian lately. I end up sleeping at the weirdest of moments and at least staying up most nights. I am therefore choosing “night” as my word of the week.

The Reading Residence

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.