Listen to “Trisomy 18, Edwards Syndrome Takes the Life or Baby Marita – Her Mom creates Marita Brings Life Foundation thin 2 ours with a max. Life…” on Spreaker.
Marita at 2 days old. We were told she was going to die within 2 ours with a max. Life expectancy of 2 days This was her at 2 days old, alive and kicking.
Where Do We Grieve?
when it is our safe place
that died.
How do we tell lungs
to breathe through the pain
when they’re mourning
the air itself. –
Bereaved mum, anonymous
Abstract
This research aims at examining parents’ healthcare experiences for children with Trisomy 13
and 18 across three countries in the EU and the US, with emphasis on cultural, social and
medical perspectives on their interaction with healthcare professionals. The study using
semi-structured interviews explores how parents and children are wronged systematically;
ways in which there can be a clear lack of communication, ethical dilemmas, and ways in
which children with Trisomy 13 and 18 are stereotyped regarding the treatment that they are
given. Going further into the principal outcomes, it is worth to note that the parents are
essential in demanding their childrens’ care, as they actively dispute the medical
professionals and fight for their children’s rights, if the latter face withdrawal of care, or even
active unconsented palliative care. Additionally, the research addresses how parents attempt
to strategize against these situations by forming parent support groups, both formally and
informally, that allow better access to better healthcare facilities. Moreover, there are the
further findings of the research – the research shows that there exist serious violations of
ethical principles such as the principle of informed consent, the criterion of proportionality
and human rights violations with regards to equal access of medical care for the disabled. The
research shows that there is a need to design and implement better and sensitive health care
practices that respect the views of families with T13/18. For example, it advocates for
increased understanding of profession and parent communication, increased support of family
members and more attention paid to discrimination against children with T13/18 in
healthcare. These findings advance the knowledge in the field of Medical Anthropology,
Disability Studies, and Genetic Counseling that can be useful in the future health care
practices and policies for the families of the children with genetic disorders.
Acknowledgements
This dissertation is dedicated to my daughter, Marita, who was born on July 31, 2018, and sadly passed away
on September 1, 2018. I may never know if she would have survived had she received the care typically afforded
to a child unaffected by a chromosomal anomaly. My daughter was denied even the most basic care, such as
water and food. I extend my deepest gratitude to those parents who have entrusted me with their stories and to
the children who have shared their profound joy and love for life with me. In particular, this dissertation is
especially dedicated to Febe, who tragically passed away, most likely unnecessarily, while I was in the process
of writing this dissertation. I also wish to thank everyone who supported me in various ways. Special thanks go
to Professor Jonathan Gross at DePaul University, Chicago, who never stopped believing in my work.
Preface
It’s January 25, 2018. I’m about to walk the dog, feeling good, when the phone rings and my obstetrician speaks
in an aggressive tone: “You haven’t looked up your NIPT (Non-Invasive Prenatal Testing) results!” I calmly
respond, “Yes, indeed,…” I try to explain that I decided not to look them up. Upon returning home, I felt I had
been somewhat pressured into this. She had said, “It’s good to test because you and your husband (“Who says I
am married?”, I remember thinking.), will be able to provide better care for your child in case it has a genetic
disorder like Down syndrome. You’re 38 years old, don’t you think it’s a good idea?” I had answered, “If this
test is meant to help me get better care for my baby… if I can use it to inform myself, and if it’s not going to be
used against me or my child or my family…I would like to do it.” Thus we proceeded.
“But will my child get better care?” I later wondered. “Why should I do a genetic test if any child is more than
welcome? Wasn’t I causing myself a lot of worries and difficulties by knowing, instead of enjoying the bliss of
not knowing? What would this knowledge and the accompanying stress do to my child?” The obstetrician told
me she wouldn’t look up the results, and I had trusted her. “It’s your own responsibility; I won’t do it for you,”
she said in a snarky tone, while handing me a post-it with a login and password. Today she calls me, seemingly
enraged, and I don’t get a chance to stop her. She interrupts me and continues shouting statistical facts through
the phone.
“Your child has a 43% chance of Edwards syndrome. It’s similar to Down syndrome but much worse. It comes
with curved legs and arms, rock-bottom feet,… It will never be able to walk or speak. It’s the worst possible
disability there is. When are you coming in?”
I sit down on the puppy’s crate. He keeps pulling at his leash, eager to go out, and doesn’t pay attention to my
phone conversation. Nature calls. I breathe deeply, trying to buy some time, and respond, “Why should I exactly
come in?” I notice a hint of irony in my voice—a tone I would later recognise in other parents’ voices, much
later, after my daughter had passed away and I finally connected with them.
The obstetrician sighs and exclaims, “YOU SHOULD COME IN FOR YOUR APPOINTMENT. THERE IS
NO TIME TO LOSE,” then continues, “You were already late,” this time in an accusatory tone. (“Being
pregnant is not being sick,” I remember thinking to myself. I was barely two months pregnant when I had
contacted her.) “Which appointment?” I ask. (“A 43% chance of Edwards syndrome?” What on earth does that
mean? “Is the baby going to be half disabled?”, I remember thinking while drifting away into cynicism.
Thoughts are racing through my head at this point.) Before I have a chance to ask for further clarifications, she
rambles on:
“…IN BELGIUM WE ABORT SUCH CHILDREN. YOU SHOULD COME IN FOR YOUR
APPOINTMENT!!”
I now understand what “your appointment” means when she explains her cultural understanding of the matter.
This was also my first encounter with a typical discursive practice around NIPT, abortion, and having a child
with a trisomy disorder. “Coming in for your appointment” clearly meant “in Belgium we abort such children”,
the “appointment” was the “abortion appointment,” and “aborting such children”, apparently a normal procedure
here.
Calmly and politely, I clarify my position: “Whether to abort my child or not is still a decision to be made by me
and me alone, in whichever country I live.” I am not necessarily pro-life, nor am I pro-abortion. However, I am a
feminist, and nobody decides over my body and the little foetus growing inside me but me.
My experience also has a personal component. Following the standard DSM definition, I could be seen as
disabled (cf. I am diagnosed on the autism spectrum). Yet, I strongly align with how autistic sociologist Judy
Singer described our neurological difference: we’re neurodivergent, not disabled. Strictly speaking, we’re not
even necessarily autistic in the negative sense of the word. I have other qualities, other capabilities. I know my
value, and I have equal rights. My future disabled child has equal rights too.
“My dog needs a walk. I’ll call you back later. Thank you so much for your call,” I manage to politely utter. As I
put down the phone, I feel an incredible sense of unsafety in and around my body. I tremble as I walk into the
woods behind the house. Walking through the forest, I listen to the sounds around me, while the dog happily
runs about. There seem to be no problems here… until I lose sight of him and find him standing on the ice of the
little lake. He’s looking at me with terrified eyes. I’m terrified too. What have I gotten myself into? We’re both
on thin ice… and I’ve made a huge mistake consenting with this NIPT.
While helping the dog out of his precarious situation, I somehow come to terms with what just happened. The
doctor, whom I had confided in, had literally pulled the rug out from under me. Weren’t these results supposed
to be used to “improve and provide better healthcare for my child in case she would have a genetic disorder?” I
wasn’t even thinking about how she had looked up my results while saying she wouldn’t. It didn’t sit well with
me that now, all of a sudden, “better healthcare” was being translated into a—supposedly, if I could believe
her—national procedure to abort “such children.” How trustworthy was this NIPT actually? I wanted to run, as
far away as I could. This wasn’t really happening… THIS WAS NOT GOING TO HAPPEN TO ME, TO
US… At that moment, I even thought I could escape from it.
I walked, almost ran back to the house. I felt so small, so vulnerable, so full of adrenaline… I’m back at the
house and call the hospital: “I am calling in reference to my earlier conversation with Dr. X, you might know
about it?” “Yes”, mumbles the nurse. “I am calling to say I am withdrawing consent in sharing my and my
daughter’s medical files with any other hospital, including my GP.” The nurse responded: “This is not how
things work over here, maybe it’s different in the Netherlands.” (I have a Dutch accent.) “Yes this is how things
work over here,” I respond firmly, “I live here. I was born and raised here and I am aware of my rights. I do have
a right to medical confidentiality as any other person does. This right applies to my and my child’s medical files.
Also in Belgium. So again, I am asking you to clearly include in my medical files and those of my child, that
there is no consent to share them with anyone. Also not my GP. Please can you make sure to have a copy
available? I’d like to pick it up as soon as possible. I’ll drop by in 30 minutes. If it’s not ready, I’ll wait.”
An hour later, files in hand, I find myself buying a newspaper in the city centre. I need something to ground
myself in reality. But while reading the newspaper, I can’t stop thinking: “This is not my world anymore.
Nothing in this newspaper relates to me. I am here, you are all there. I’m in a different world. I’m falling into an
abyss that you all don’t know about. What is happening to me…?” Then the phone rings. My GP: “I just had a
call and heard you picked up your files from the hospital?” “There is no consent to share my files.” At this point
I feel I am getting angry. My patience is gone. “Yes, I know,” she rambles on, but I am barely able to receive
what she says, and feel myself sinking away, deeper and deeper, until I hear: “But don’t you think that if the
doctor advises you to abort, it would be wise to listen to her? Don’t you think the doctor knows better?”
That afternoon, I contact my former GP in the Netherlands and politely ask for a referral to the nearest Dutch
hospital. I am Dutch, live on the Dutch-Belgian border, and am insured in both countries (a luxury not everyone
has). I firmly believe that crossing the border, I would find a welcoming and nurturing environment—a place
where my possibly disabled child would be treated as an equal citizen. If I had only known.
Introduction
This dissertation explores the experiences of families of children with Trisomy 13 and 18
(T13/18), two severe genetic disorders, within the healthcare systems of three countries in the
European Union (Belgium, the Netherlands and Germany), as compared to experiences of
parents in the American healthcare system. The research investigates the extent to which the
differing views of parents and physicians regarding the care of children with these genetic
disorders influences parents’ experiences when they encounter negative eugenics.
Additionally, the study seeks to identify the culturally specific strategies that families employ
in response to these challenges. The study will compare parental experiences in the healthcare
systems of the US, characterised by a typical litigiousness and overwhelming fear of being
sued for medical malpractice, and these three countries in the EU, in order to understand how
modern-day eugenics is constituted in both the prenatal and postnatal context in these
Western societies.
A key aspect in the disability debate is the evaluation of the role of medicine in
defining disability in Western societies. As Foucault (1976, p. 252) argues, in biopolitical
states, ‘medicine becomes a political intervention-technique with specific power-effects.
Medicine is a form of power-knowledge that can be applied to both the body and the
population’. Similarly, Oliver (1990, Ch. 3) contends that the category of ‘disability’ is
socially constructed and fluid, able to resolve systemic contradictions within a given society.
Moreover, once certain groups are classified within this category, it becomes difficult, if not
impossible, for them to be excluded, creating a ‘distributive dilemma’ for states that can be
addressed in different ways depending on their mode of production. Oliver (1990, Ch. 3)
suggests that distribution based on needs may indicate the emergence of a socialist system,
while distribution based on costs may reflect a capitalist mode of production.
As Foucault argues, in its most extreme forms this ‘distributive dilemma’ manifests in
biopolitical societies in forms of ‘racism’. Foucault (1976, p. 255-259) argues that ‘racism’,
is ‘primarily a way of introducing a break into the domain of life that is under powers’
control: the break between what must live and what must die’. According to him, racism may
be seen as processes of stigmatisation, abandonment, rejection, expulsion and discrimination,
on the one hand. Or, on the other hand, as processes of killing or indirect killing…
