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…

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#AndreasDeutschmann

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Listen to “Actors Temple – Pinkalicious, The Musical” on Spreaker.

#ActorsTemple #PinkaliciousTheMusical

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PGHD is characterized by insufficient production of growth hormone (GH) by the pituitary gland, which is a small gland located at the base of the brain. It is estimated that 1 in 4,000-10,000 children globally have PGHD.

Here are 7 things children with PGHD may experience:

Short stature
Delayed puberty
Bone development challenges
Decreasing muscle mass and weakness
Emotional challenges
Low blood sugar
Reduced strength and endurance
Left untreated, PGHD can limit a child’s potential, physically, emotionally, and socially.

PGHD doesn’t just affect children—parents and caregivers of children with PGHD may feel discouraged and overwhelmed during this journey. Their concerns and fears about how this condition will impact their child can leave them feeling unheard.

It’s critical for parents to consult a healthcare professional as soon as they begin to notice delays in their child’s growth. Early diagnosis of PGHD and treatment are time-sensitive, especially because a child’s growth plates will eventually fuse, limiting their ability to achieve their full height potential. Delaying treatment can negatively impact final adult height and potentially affect other aspects of development.

For decades, the only treatment option available was daily injections of human growth hormone (somatropin). Long-acting growth hormone treatments have been developed that are given just once a week.

Healthcare professionals can work with parents to determine if treatment is needed and help ease concerns such as:

Noticing growth concerns and seeking guidance
Feeling anxious about timely diagnosis before growth plates fuse
Uncertainty about options to treat PGHD
Navigating the responsibilities of PGHD management
On Wednesday, September 17, Dr. Nidhi Gupta, pediatric endocrinologist, and founder and CEO of KAP Pediatric Endocrinology, is available to share her insights on what all parents need to know about PGHD. She will also discuss its signs and symptoms, and how treatment can help.

Interview courtesy: Ascendis Pharma

#AscendisPharma #GrowthAwarenessWeek #ChildsOverallHealth #PGHD #DiagnosingPediatricGrowthHormone

The post IS MY CHILD’S GROWTH ON TRACK? What Parents Should Know September 14-20: Children’s Growth Awareness Week appeared first on Good News!.

New Statistics Show Rising Concerns from Parents Around Opioid Epidemic

Dr. Bonnie Milas, professor of Clinical Anesthesiology & Critical Care Medicine at the University of Pennsylvania, has a uniquely personal stake in the battle against the opioid epidemic. After tragically losing two sons to accidental opioid overdoses, she is now on a mission to rally parents and others to be ready to rescue in case of an opioid emergency.

Opioid overdose is the leading cause of accidental death in the United States, and many people do not realize opioid overdoses can happen anywhere and at any time, most commonly in our own homes. Naloxone is a medication designed to reverse the effects of a life-threatening opioid emergency and can be used to revive someone during an overdose while waiting for emergency personnel to arrive.

Younger generations are particularly at risk for opioid overdose as fentanyl poisonings continue to be on the rise. In 2022, 22 high school age adolescents died each week from overdoses driven by fentanyl-laced prescription pills.

According to a new survey, nearly 9 in 10 parents believe that normalizing the topic of opioid overdose and reversal treatments like naloxone could help save lives, and that a more robust national conversation could be part of the solution.

In addition, 90 percent of survey respondents agree that schools, public libraries, dorms and professionals who work with teenagers and college kids should have access to naloxone. Increased naloxone access could already be making a big impact, as the Centers for Disease Control & Prevention (CDC) recently announced provisional data on drug overdose deaths in 2023, finding there was a 3 percent decrease in deaths compared to 2022.

As back to school quickly approaches, Dr. Milas will be available on July 18 to discuss the “Ready to Rescue” campaign, which aims to raise awareness about opioid risks and educate the public, including parents, on how to be prepared with naloxone to help save a life in an opioid overdose emergency. She will also discuss how her personal experience has fueled her passion for calling attention to the dangers of opioid use in addition to:

The importance of breaking the stigma associated with opioid overdose, because accidents happen

How to talk about opioids and overdose with children, and why parents should always be prepared, especially parents of children going to college

The signs of an opioid emergency and how everyone has the power to save a life.

CAN YOU TELL US WHY THIS IS SUCH A PERSONAL MISSION FOR YOU?

WHAT IS “READY TO RESCUE” ALL ABOUT?

WHAT ARE SIGNS OF OPIOID EMERGENCY AND THE BEST ACTIONS TO TAKE?

IS THERE A STIGMA ASSOCIATED WITH OPIOID OVERDOSE AND WHY?

HOW DO YOU BELIEVE PARENTS CAN HELP WITH THIS ISSUE… AND WHERE CAN THE AUDIENCE FIND MORE INFORMATION?

BIO:
DR. BONNIE MILAS

Bonnie Milas, MD, is a mother and clinical professor of anesthesiology and critical care medicine at the University of Pennsylvania. Dr. Milas is an outspoken advocate for those suffering from opioid use disorder (OUD) and is painfully aware of the impact it has as she lost both her sons to the disorder. Through her work locally with the Bucks County Drug and Alcohol Commission and nationally with the American Society of Anesthesiologists (ASA), she is an ardent educator of naloxone overdose rescue.

Dr. Milas’ clinical practice involves caring for patients undergoing cardiopulmonary surgical procedures and those in the intensive care unit following surgery. Helping to deal with the ravages of infected heart valves from intravenous drug use, she handles the post-operative management of opioid withdrawal and pain control. Dr. Milas’ writing on saving lives of those suffering from OUD has appeared in The Philadelphia Inquirer and USA Today.

Interview is courtesy: Emergent BioSolutions; References available

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#bob #lee #radio #schools #youngsters #hurt #us #scared #parents #dad #mom #cry #prayed #pray #bad #people #stop #killed #innocent #homeless #god #resolve #problems

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https://familyfilmawards.com/
&

DYF Presents

Invites you to Celebrate

American Born Chinese

on the

UN Global Day of Parents

https://www.un.org/en/observances/parents-day

Appreciate All Parents Throughout the World

Since the 1980s, the important role of the family has increasingly come to the attention of the international community. The General Assembly adopted a number of resolutions and proclaimed the International Year of the Family and the International Day of Families.

Emphasizing the critical role of parents in the rearing of children, the Global Day of Parents recognizes that the family has the primary responsibility for the nurturing and protection of children. For the full and harmonious development of their personality, children should grow up in a family environment and in an atmosphere of happiness, love and understanding.

Designated by the General Assembly in 2012, Global Day of Parents provides an opportunity to appreciate all parents for their “selfless commitment to children and their lifelong sacrifice towards nurturing this relationship.”

2023 Theme: The power of parenting:

raising happy, healthy and hopeful children

Families, parents and caregivers play a central role in child well-being and development. They offer identity, love, care, provision and protection to children and adolescents as well as economic security and stability. In keeping with the spirit of the Convention on the Rights of the Child, family and parenting support is increasingly recognized as an important part of national social policies and social investment packages aimed at reducing poverty, decreasing inequality and promoting positive parental and child well-being.

Throughout June, UNICEF and partners are sharing expert tips and resources designed to support caregivers and their families. From mental health guides on everything from self-care for busy parents to supporting teens during stressful times. Fun play ideas that support child development and helps you make the most
of every moment together.

And a call for governments, business and others to scale up parenting support and ensure
universal access for all families

Sun Wukong’s son in the United States
Journey to the West ABC ,

Huge number of United States viewers, rave about the American Born Chinese Show

The American Disney Film Company

launched a wonderful TV series called

American Born Chinese,

and some people translated it into

“Journey to the West ABC”.

It tells a touching story about Monkey King’s child, who descended from the sky
and arrives on Earth as a Chinese student.

This TV series is very imaginative. It uses the characters in the four famous Chinese novels

“Journey to the West”

to come to the core of American culture-campus life, and draws out the resistance and justice of two students in the face of the ridicule and competition of white children.

Their energy, imagination and kung fu won the admiration of everyone, and won the care and affirmation of Avalokitesvara and Sun Wukong.

If you look at it with ordinary eyes, this movie is too outrageous,
but Hollywood is always looking for the point where the wonders of the world are related to the fate of each of us.

Sun Wukong fights goblins, there is no Chinese Chinese child who does not know,

but the price and choice of Sun Wukong who learned from the Western Paradise –

Wukong lives the same life as the sky is not to be erotic –

Wukong symbolizes his identity, but in this place
full of race In today’s American society with hatred and all kinds of contradictions, this Asian born in the United States, in despair, has a way to survive: imagine turning himself into the son of the hero Monkey King!

The campus where everyone defends themselves has become a battlefield for interpreting traditional Chinese stories and successfully finding their own identity symbols.

Hit you without discussing, just come for your own equal rights!
An eye for an eye, an eye for an eye, make the world dark again,

and shine a light in the darkness.

The darkness before dawn is always dark for two hours.

In American Born Chinese

“Journey to the West ABC”,

two Chinese students gradually discover their own value and strength through cooperation

and learning with the characters in traditional
Journey to the West.

Their adventure is not only a story of defeating evil forces, but also a journey of identity exploration. They discovered that their Asian identities were a source of unique strength and pride, , rather than an embodiment of ridicule and envy

American Born Chinese

“Journey to the West ABC”

is currently being broadcast on mainstream media channels in the United States, starring Michelle Yeoh, Daniel Wu, Kwan Jiwei and other well-known actors.

They hope that through the expression of such stories, they can help people better understand and appreciate Eastern culture, and promote the recognition, respect and integration of Eastern and Western cultural diversity.

These well-known actors have worked in Hollywood for decades.

Michelle Yeoh won an Oscar for Chinese-dominated Oscars a while ago.

During the strike of Hollywood playwrights, all the most popular movies, TV shows and award-giving activities were suspended in May- Asian Pacific Month – Launched this Journey to the West ABC, which was a hit, it really is the manifestation of Guanyin Bodhisattva!

The Family Film Awards hope that this magical comedy will attract the support of more friends, stimulate the thinking of Chinese people in the United States,

let more Americans understand the history of civilization in Eastern China, and build
a more inclusive civilized society

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Try Not To Laugh _ Funniest Babies Playing With Fish

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YOU GOT THIS KID AND QUINNIPIAC UNIVERSITY PROFESSOR

Got this Kid Sponsors and Speakers

Listen to “YOU GOT THIS KID AND QUINNIPIAC UNIVERSITY PROFESSOR” on Spreaker.

Got this Kid Awardees

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Listen to “YOU GOT THIS, KID! Leadership Foundation (YGTK!) because someone very close to me suffers from LUPUS, a debilitating auto-immune disease.” on Spreaker.

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