Tag Archives: NICU

The Five Most Significant Events

Oh my, why can’t I seem to write when I truly want to? I mean, I feel uninspired, but then again I have a lot of collections of writing prompts. I have at least three eBooks full of writing prompts, a few collections downloaded from the Internet and even an app on my phone. From this app, Paperblanks, comes the prompt I’m going to journal on today. The prompt asks me to name the five most significant events of the first 25 years of my life.

This is going to be really hard, as I’m supposed to name just five. The last nearly seven years do not count, so I cannot mention the day I finally left the psychiatric institution or even the day I got married. I am however more tempted to write on more recent events, whereas my childhood was important too. I just don’t remember it that well.

1. The day I came home from the NICU, September 29, 1986. The first one, hence, is going to be one I have zero memory of but that shaped me for the rest of my life. After all, if I’d not made it home from the hospital at three months of age, I may not have been alive or able to share my story today. I came home on my due date.

2. The day I started in special education, May 11, 1992. I had to leave Kindergarten at a mainstream school before the year was over. Till this day, I don’t know why. My parents claim that the reason I had to transfer to the school for the visually impaired is my need to learn Braille, which I didn’t get to learn until more than a year later. They also say my Kindergarten teacher wouldn’t be able to move to first grade with me and no other teacher could teach me. However, then why did I have to leave so suddenly? In my memory, I was ill shortly before leaving the mainstream school, but I don’t know what that has to do with it, if anything.

3. The day I started back in mainstream secondary education, August 25, 1999. This day is significant because it shows my ability to be determined. A lot of people say I’m not determined at all and give up way too easily, but I did complete the full six years of my level of secondary education even though I hated it. I don’t think my parents deserve all the credits for this.

4. The day I started in rehabilitation for my blindness, August 22, 2005. This day is significant because it symbolizes my self-direction. It was the first time I decided I wanted to work on my own goals rather than those set forth for me by my parents.

5. The day of my admission to the mental hospital, November 3, 2007. Do I really need to explain? This day symbolizes my ultimate break-away from my parents’ power over me. Even though those 9 1/2 years in the institution weren’t too productive, I don’t regret having agreed to be admitted at all.

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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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Birthday

My birthday is over. Now I’m 28 and it’s back to normal life I guess. The entire week was really largely about my birthday and the memories it triggers for me. That’s why I’m linking up with Word of the Week with my word for this week being “birthday”.

I wrote already earlier this week that it’s 28 years since I entered the world and the neonatal intensive care unit. When they came to visit today, my parents gave me a CD by Jan Henk de Groot with music on it about the singer’s son, who spent a large part of his first year in hospital because of a birth defect. My mother said it’s appropriate, and I agree. Incidentally, a few days ago I saw there’s a group for PTSD related to NICU experience on Facebook. It’s for parents, of course, and, while I applied, I may’ve been denied.

My sister already visited last week and brought some nice presents: a T-shirt, storage bins and bottles. The bins were intended for herbal tea, but I stored cereal in one of them, then the bin fell from a shelf and my entire floor was covered in cereal. The bottles are for blending massage oils or lotions in. I have a collection of essential oils already and got sweet almond oil, which is a carrier oil, from my sister, too. In addition to the CD, my parents gave me a nice collection of glass beads for my jewelry-making.

My birthday itself was largely a day like any other. At the acitivity room, I made a collage with butterflies, hearts and flowers, which are both things that make me happy and symbolize things I wish for myself for the coming year: love, transformation and bloom. My husband came at 3:30 PM to pick me up and drive us to the city, where we went shoppping for a skirt for me and went to eat out. I can judge from the skirt size that I’ve gained a lot of weight lately. Not good. I really need to look back at my theme for this year, which was self-care, and make sure I start eating more healthfully. Tomorrow.

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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.

First Step in Healing the Inner Baby

When I still had the diagnosis of dissociative identity disorder, my inner children came out relatively often to people I know. This is not common with DID I’m told, and was probably one reason for people not to believe me. I now have a diagnosis of borderline personality disorder and, while the inner children are still there, I keep them in hiding. I tend to believe that only the adult me is allowed to be out in the body.

This belief, however, is counterproductive to healing. When we want to heal, we need to acknowledge all parts of ourselves. We also need to validate our experiences. I strongly disagree with the idea, which is how my therapist used to word her inner child theory, that only the abandoned inner child should be allowed to come out because the rest are there to mask her. I consider my angry innenr child as important, and I for one don’t have a critical parent insider – all insiders are part of me.

Trust is the first step in healing your inner child(ren). They need to know that you will be there for them. In this step, I achieved something important in art therapy last Thursday. One of my inner children is the “mini baby”, a preemie in an incubator. She isn’t really active in the outside world, but I sense her. For clarity’s sake, while some people with DID have baby alters who hold traumatic memories, I don’t believe the mini baby is like this; she seems to be more a symbol for my early experiences.

Anyway, in art therapy, I created a baby out of clay and made a crib for her out of a cardboard box with fabric and fake fur bedding. Like I said, the inner baby isn’t a typical alter, so the symbolism was enough. It was more of a gesture to myself and my actual inner child alters to let them know I can be trusted and they will be cared for.

The second step is validation. I’m not sure I really need to validate the inner baby, since like I said she’s not a real alter. I mean, some people with DID give their inner babies pacifiers. I won’t do this. What I do feel that I need to acknowledge, is the fact that I was wounded from the beginning on. I don’t mean this to pass judgment on my family or the hospital staff. I was probably well cared for and had more interaction with my parents than many preemies from earlier generations or whose parents lived farther from the hospital. What I want to say is that, as much as families and hospitals try to prevent this, a NICU stay can entail a form of attachment loss and can, depending on the baby’s temperament, be traumatic. For now, the symbolism of the ceramic baby in the crib helped all of me.

Musings on Premature Birth and Quality of Life

A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.

Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.

My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.