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…

The post Trisomy 18, Edwards Syndrome Takes the Life or Baby Marita – Her Mom creates Marita Brings Life Foundation thin 2 ours with a max. Life expectancy of 2 days This was her at 2 days old, alive and kicking. appeared first on Good News!.

Please send this to some of you mailing list friends.

Help save lives…

CHAIRS
Lenore Cooney
Sara Herbert-Galloway
Errol Rappaport
Gary Springer

HONORARY CHAIRS
Ambassador and Mrs. John L. Loeb, Jr.
Heather Randall
Liv Ullmann and Donald Saunders
Nick Springer

HONORARY COMMITTEE
Iris Apfel
Michael Badalucco
Susan and Hon. James A. Baker III
Deion Branch
Steve Buscemi
Victor Calise
Commissioner for the Mayor’s Office
for People with Disabilities
U.S. Senator Susan Collins
Darius de Haas
Roque de la Fuente
Jamie de Roy
Judy and Rod Gilbert
Adam Graves
Lynn Grossman and Bob Balaban
State Senator Jack Hart, Ret.
Felicity Huffman and William H. Macy
Helen and Michael Kaplan
Lainie Kazan
Amy Madigan and Ed Harris
Michael H. Michaud
Assistant Secretary,
U.S. Department of Labor
James Naughton
Kyle Rudy
Susan Sarandon
Richard Thomas

BENEFIT COMMITTEE
Jeri Acosta
Chuck Armstrong
Tomaczek Bednarek
Lynn and Alan Bozof
Joyce Brooks
Lori and Curt Buher
Lorraine Cancro-Silvetz and
Robert Silvetz, MD
Elizabeth Cier
Rita Cosby
Mark Evangelista
Nicole and Jeff Fratarcangeli
Jeri Brooks Greenwell
Jonathan Hadaya
Paul Hampton
Laurie and Ken Hartwig
Charlotte and Harvey Hodges
Lucia Hwong-Gordon
Susan James
Marcie L. Kammel
Barry J. Klarberg
Marian Koltai-Levine and Dan Levine
Donna and Michael LaForgia
Lucy Jane Lang
Barbara Ligeti and Jeffrey Altshuler
Kelly and Paul Lountzis
Annie Ma
Leslie Maier

Cindy Marinangel
Kevin McGovern
Sherri Michelstein
Esther Muller
Rey Olsen
Susan and Peter Purdy
Joe Sirola
Jennifer and Ricky Sitomer
Gary Swanson
Joe Trentacosta

ASSOCIATES COMMITTEE
Samantha Bennett
Anna and Carl Buher
Alana Galloway
Justin Galloway
Gunjan Goel
Allie and Matt Klarberg
Kate and Jake Klarberg
Nikki Klarberg
Ryan Klarberg
Sorcha McCrohan
Dell Miller
Andrew Molen
Jorel Roth
Brooke and Lee Scharfstein
Gary Schneider
Jason Werner

MEDICAL COMMITTEE

Richard Besser, MD
President and CEO
Robert Wood Johnson Foundation

Paul J. Lee, MD
Good Samaritan Hospital Medical Center
South Nassau Communities Hospital

Paul A. Offit, MD
Children’s Hospital of Philadelphia

William Schaffner, MD
Department of Preventive Medicine
Vanderbilt University

Steven E. Schutzer, MD
Professor of Medicine
Rutgers New Jersey Medical School

Nancy Snyderman, MD
Professor of Global Health
Stanford University

James C. Turner, MD
National Social Norms Institute
University of Virginia

Roger W. Yurt, MD
NY Presbyterian Hospital
Weill Cornell Medical Center

As of April 1, 2018
National Meningitis Association

NMA works to protect families from the devastating effects of meningococcal disease by educating the public, medical professionals and others about the disease and vaccines available to prevent it. NMA was formed in 2002 by parents whose children died or live with permanent disabilities from meningococcal disease. Like many families, NMA’s founders were unaware that meningococcal disease vaccination could have prevented their anguish. Since NMA was founded, great strides have been made in meningitis prevention. NMA has supported the creation of broad recommendations for meningococcal vaccines to protect all preteens and teens, worked to advocate for state vaccination requirements, and helped increase awareness and vaccine uptake. The organization also provides emotional support for individuals and families who have experienced meningococcal disease.

To accomplish its goals, NMA develops programs and resources that reach audiences on national and grassroots levels. Parents, disease survivors and other family members help carry out NMA’s mission by conducting community awareness activities across the country through two key programs: Moms on Meningitis (M.O.M.s) and Together Educating About Meningitis (T.E.A.M.). For disease and prevention information, downloadable resources and personal stories from M.O.M.s and T.E.A.M. members, please visit nmaus.org.

Lynn Bozof, President • Lori Buher, Director • Leslie Maier, Secretary/Treasurer

For more information or to purchase tickets,
please contact Heather Prochorchik 212.874.5457
or HeatherProchorchik@BellEvents.com

The post The 10th Annual National Meningitis Association Gala Celebration appeared first on Good News!.

The National Meningitis Association (NMA) is a nonprofit organization founded by parents whose children have died or live with permanent disabilities from meningococcal disease. http://www.nmaus.org/
Our mission is to educate families, medical professionals and others about meningococcal disease and its prevention.

Learn about the two vaccines that can help prevent meningitis…
· The Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination against serogroups A, C, W and Y for all children at 11-12 with a booster at age 16.
· CDC recommends permissive use of meningococcal vaccination against serogroup B at ages 16-23, with a preferred age of 16 to 18 years. Click here for more information.

THE NATIONAL MENINGITIS ASSOCIATION’S ANNUAL “GIVE KIDS A SHOT!” GALA CELEBRATION

2017 CO-CHAIRS, LENORE COONEY, SARA HERBERT-GALLOWAY, ERROL RAPPAPORT AND GARY SPRINGER
INVITE YOU TO A
KICK-OFF COCKTAIL PARTY
with special guests Judy and Rod Gilbert

MONDAY, MARCH 27, 2017
5:00pm – 7:00pm
REMARKS 6:00PM

LOVAGE ROOFTOP LOUNGE at MAGNOLIA RESTAURANT
350 WEST 40th Street at Ninth Avenue
NEW YORK CITY

Cocktail Attire

RSVP to Heather Prochorchik at 212.874.5457 or heatherprochorchik@bellevents.com

THANK YOU FOR YOUR SUPPORT!

At the Gala on Monday, May 8, 2017, NMA will honor New York Ranger hockey legend Rod Gilbert with The Nancy Ford Springer Inspiration Award; Dr. Amy Middleman, Professor of Pediatrics at Oklahoma University, will be recognized with the Health Achievement Award; Francesca Testa and Kayla St. Pierre, NMA advocates and meningococcal disease survivors, will be celebrated with T.E.A.M. Outstanding Service Awards; and The Spirit of NMA Award will pay tribute to the McKenzie Meningitis Foundation.

The post The National Meningitis Association (NMA) is a nonprofit organization founded by parents whose children have died or live with permanent disabilities from meningococcal disease. appeared first on Good News!.

Actually I have nightmare every day and I am scared to death as to the outcome, my bothers and fist cousin keep threatening to evict and move my mother to a small one bedroom in Queens. They have hired two attorneys that are specialists (That are being paid by my father’s estate) that are against my mother and I. Everyday we read about elderly women prayed upon and raped in nursing homes, caregivers that overmedicate and abuse their patients. Cruelty that is unjust and one of the consuming and overwhelming reasons that my grandparents and parents worked so hard to flee for their lives and from the nightmares of the ghettos of Russia, Away from the fear of death and bullying of the “Pogroms”. My mother’s father never left his home for over two years. My mother still has nightmares of the soldiers coming to her door asking if they were Jewish, while they were hiding in a closet in the dark, afraid for their lives. I hold her hand while she is going through this recurring nightmare. As I am next to her I too start crying at the fear and cruelty I am living for giving up my life to move back home and live like a child again and questioning everyday if I did and do the right thing. Desperately trying and searching for approval from friends and acquaintances, as family members only see me as blocking them from getting their money. Fearing that this will happen to me , knowing I have hostile trustees that will get back at me later. Just as my mother has fears when I’m not around. I fear for my mother’s life, as it will take a sheriff, doctors, sedation and the police ambulance before I will let anyone move my mother from her home of 46 years. I have sleepless nights about the possibility of that outcome. I read everyday about supposedly close families and then the disgusting family situations. On the other hand I think and pray that my mother would be better off not being here on earth and seeing the obvious. Nobody comes to break bread with her anymore. My mother was nobodies fool. She always had the ability to go right to the heart. I know she still sees. Relatives call at night to make their obligatory daily call and she says “I love you, when are you coming to see me?” and then the caretakers and I hear their bullshit answers. On the other hand I am frustrated and confused that I have this conflicting feelings.

Didn’t I come from the same womb? Is there a right or wrong? I thought everyone was taught to honor their mother and father. Didn’t they get the same love I did? Why do I feel so alone in the family? Am I right? Am I doing the right thing? Why do I let that Devil and Angel struggle throughout me everyday? Why don’t I walk away, let them move my mother, hire cheaper care givers, overmedicate her, sell the apartment, call home everyday, get the same amount of money, live my life, my mother’s 96 – she lived her life, liquidate all the assets of the estate now, so when my mother dies everything is done . No body will be obligated to come from Florida, Syracuse, California, Kansas City, Delaware , Brooklyn , Rockville Center after the funeral.

Additional thoughts

My mother and father earned the money, not I or my brothers.

The agony of the indecision and fear of not knowing

I am on an emotional roll a coaster every day going through the gamut of emotions.

I am afraid to go out grocery shopping or to a meeting for fear that my brother’s will have her taken out by medication and force.

My note to my dad – laid on his heart , under the shroud in his casket

My Aunt Darolyn suggested I write a note and put him under his shroud next to his heart so he could read it on his way up to heaven. I also said I will email him in heaven on Facebook. I placed a bell in your left hand and said “if you need me for anything on your way to heaven, just ring the bell and I’ll be right there. I also placed a black Grenadine tie, that you love so much. Ties were your way out of Palooka-ville and making a better life for you, mother and your family.

Errol

The post My Life today – living with my mother 96 with Alzheimer’s and Dementia by: Errol Rappaport appeared first on Good News!.