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Introduction
Welcome to Hygeia®. Hygeia®, symbolic of the Greek mythological goddess of health and
healing for which it is named, is an international community of compassion, empathy and
support for families who have endured the tragedy of miscarriage, stillbirth and neonatal
/ infant loss. The Hygeia Foundation, Inc. is a IRS approved 501c-3 non-profit
organization. Online since 1995 and with over 29,000 members, Hygeia® has become the most
enduring program of compassion, empathy and support pertaining to Perinatal Loss. Hygeia®
provides programs to educate, counsel and support families who grieve the loss of a
pregnancy or newborn child, advocate for the healthcare of women and children,worldwide,
and promote humanism in the education of tomorrow's healthcare professionals.
The Hygeia Foundation, Inc. and Institute
for Perinatal Loss and Bereavement is a non Profit, 501-c-3 organization with a Board of
Directors, a Medical Advisory Board and a Parents Board. The Founder and President is
Michael R. Berman, M.D. The mission of the Hygeia Foundation, Inc. and Institute for
Perinatal Loss and to comfort those who grieve the loss of a pregnancy or newborn child.
The Hygeia Foundation, Inc. is striving to improve the awareness of the impact of
perinatal, neonatal and infant loss on families, community and society and supports the
premise that perinatal and infant morbidity and mortality can be affected by providing all
women and their families who have experienced perinatal losses e.g. Stillbirths, the
availability of perinatal bereavement counseling, pre- and inter-conception counseling (
including an evaluation and understanding of their losses) and access to comprehensive
women's healthcare services. In addition, it is our commitment to educate and support
healthcare professionals as they care for their patients experiencing perinatal and
neonatal loss.
Summary:
The Hygeia Foundation comforts families of all socio-economic and ethnic backgrounds who
have experienced the tragedies of pregnancy loss and neonatal death. The Hygeia Foundation
has been operational for eleven years and has an international membership of more than
29,000 families who have experienced the tragedy of perinatal and early childhood deaths
and the hope for a family subsequent to these losses. The Hygeia Foundation strives to
improve disparities in access to women’s healthcare and pre-natal healthcare services
by enabling all women in need of women's and maternal and child health services to find
and be introduced to these services with respect, dignity and advocacy
(http://getcare.info). Through the Ephemeris Project, (http://ephemerisproject.com)
perinatal and childhood death serve as a paradigm for humanistic approaches to medical
education. This program utilizing reflective writing, mentoring and a philosophic approach
to patient care provides a therapeutic, cathartic and beneficial value to the education of
students and helps them appreciate that their life’s work is truly one of
‘privileged human relationships’. Further activities of the Hygeia Foundation
include counseling and facilitation of local and online support groups, access to new
information technologies for learning, and the funding of burial and memorial programs for
families in need when their children die.
Target Populations / organizations:
All families who have experienced perinatal and neonatal deaths, alienated and
disenfranchised women and teens in need of health care access, health professional
students, in-kind non-profit organizations, hospitals, clinics and other healthcare
institutions and healthcare providers.
Transferability:
The fundamental tenets, framework and philosophy of the Hygeia Foundation have universal
transferability. The three main programs of Hygeia use common platforms of ICT; online
communities using email and message board communications, data base access of users, and
directed information, literature and learning tools specific for Perinatal Death and
Maternal and Child Health. It remains one of the enduring online communities (over 12
years) and its success can be attributed to the attention to daily monitoring and 24/7
access and availability to the Founder / webmaster / physician who is committed to the
project. Above all the program functions within a framework of ethical and humanistic
guidelines, so necessary in today's technologically centered, business-oriented healthcare
arena. This philosophy underlying its ICT components is transferable to ongoing and future
initiatives to enable more of the world's population to have access to the content and
support provided by the "World Wide Web's international community" yet equally
applicable to emerging e-medicine, telemedicine and IT patient safety initiatives where
human contact and support are necessary for the success of these efforts.
Selected Accomplishments:
· Hygeia® is among the earliest Internet programs (Established 1995)
devoted to the very difficult yet pervasive tragedy of pregnancy loss and neonatal death
and the only site of its kind entirely created and moderated by an
Obstetrician-Gynecologist.
· The Hygeia Foundation was recognized in several media reports, among
them, the New York Times, The Boston Globe, The San Francisco Chronicle, the New Haven
Register and the Hartford Courant and featured in interviews by Katie Couric on the NBC
Today Show and by Lisa Birnbach on the CBS Early Show.
· Hygeia ® was honored as finalist in the International Information
Technology Competition, The Stockholm Challenge, Stockholm, Sweden, 2001,2002 and the Get
…Care program was introduced and presented to the Society for the Internet in
Medicine, Geneva, 2003 and Prague, 2005.
· In concert with the New Haven Health Department, the Hygeia
Foundation has successfully implemented a Burial and Memorial Fund to help indigent
families bury their children.
· The Hygeia Foundation is a Founding member of the International
Stillbirth Alliance, a non-profit coalition of organizations,
physicians,parents, nurses and research scientists, dedicated to understanding the causes
and prevention of stillbirth through research initiatives.
Future – expected development:
The Hygeia Foundation is well positioned to exponentially affect national and
international communities in the aforementioned manner. The Hygeia Foundation has a
committed and active parent advisory board, peer-to-peer bereavement facilitators, and a
growing number of volunteers to assist with the growth of outreach programs. With an
infusion of funding from donations and grants, the Hygeia Foundation expects to implement
its already successful programs in underserved, rural and impoverished areas, worldwide.
Disparities mirror one another in both health care access and access to digital
technologies and this gap in making use of opportunities available from the “digital
revolution due to insufficient access, capacity, and content,” is pervasive.
Hygeia’s dissemination strategies for its content will therefore focus on proxy
users; i.e. strategically placed Internet Systems, intermediaries such as associations of
local authorities (Departments of Health, Libraries and Schools, and other Non-Profit
Organizations), practicing professionals, capacity building institutions (e.g. hospitals
and medical centers), advocacy groups, and the convergence of Information Technology and
traditional media resources; phone, fax and print media. It is anticipated that the Hygeia
Foundation’s future programs will improve the health and quality of life (i.e.
improve the human condition) of its “target group” by emphasizing the need and
necessity for health promotion, health prevention, pre-conception care, inter-conception
care, early pre-natal care and facilitate universal access and advocacy to these services.
A New Community Program of Perinatal Bereavement Support and Inter-conception Care
in New Haven, Connecticut
The Hygeia Foundation, Inc. is about to initiate an innovative approach in the New Haven
Communities in an effort to provide further attention to at risk, low income, women (and
families) after they have experienced a pregnancy loss or neonatal / infant death, no
matter when these losses occurred. The Hygeia Foundation in collaboration with the New
Haven Department of Health is already providing funding for funerals and burials for
families in need of financial support to honor and respectfully memorialize their children
and this new program is a natural extension of this commitment. The Hygeia Foundation,
Inc. will combine its peer-to-peer group bereavement support by RTS certified bereavement
facilitators with a health professional-led team (physician and or Nurse / Nurse
Practitioner / Nurse Midwife or Students ) providing inter-conception / pre-conception
medical information, education, and appropriate personal referrals ( referral letter and
help with appointment scheduling) to hospitals, clinics, physician specialists and other
in-kind organizations. The goal of this approach is for an independent, established,
non-profit organization to take a leadership role in our community to partner with, link
and build on the relevant existing services in an effort to improve outcomes for all
pregnant women and their families as well as to build a sustainable infrastructure in New
Haven to further address the needs of our at-risk families. The Hygeia Foundation
understands the multi-cultural aspects of perinatal loss in this context and the
importance of an informed, professional, and culturally competent bereavement support and
health education / literacy infrastructure. The Hygeia Foundation is mission driven to
provide the appropriate access needed for families whose socioeconomic, racial, ethnic, or
geographic status prevents them from otherwise accessing the aforementioned services.
Michael R. Berman, M.D.
Clinical Professor of Obstetrics, Gynecology
and Reproductive Sciences
Yale University School of Medicine
Founder and President
Hygeia Foundation and Institute for Perinatal Loss and Bereavement |
 Stillbirth
Research Alert Issue 1
Understanding
the Basics of Stillbirth
ISA
2007 Conference minutes and reports
Newsletter
Volume I, Number 2
Summer
2007 ISA Quarterly
2008 International Stillbirth
Alliance Conference-Oslo Norway November 5-7,'08
First
Candle / Sids Alliance
SANDS
UK
SANDS Australia
Yale-New
Haven Hospital
Baby
Kick Alliance
CiaoLapo Onlus (the site is in italian, targeted on
italian-speaking parents, but we also have a presentation page in english).
Become an Affinity Organization
Michael R. Berman, M.D.
Founder and President
Joshua Teplitzky, J.D.
Vice President
Sherman Krevolin, J.D.
Secretary
Administration
Michael R. Berman, M.D.
Chief Executive Officer
Medical Director
Rachel Steigleder-
Director of Program Services
Advisory Boards
Parents
Claudia Esposito
Lisa Harkness
Jodie Jerzyk
Melissa Levy
Ginny McParland
Sloan O'Connel
Jennifer Rosenzweig
Leslie Shannehan
Rachel Steigleder
Lisa Thomas
Medical
Michael J. Paidas, M.D.
Director
Thrombosis and Hemostasis
Department of Ob-Gyn
Yale School of Medicine
Ian Gross,M.D.
Director
Newborn Intensive Care Unit
Yale-New Haven Hospital
Professional
Alex Richardson
Founder and Director,
NetKey, Inc
Tim DiScipio
Founder and CEO
Epals.com
Tucker Leary,
Vice President
Yale-New Haven Hospital |
