Hygeia, An Online Journal for Pregnancy and Neonatal Loss
The use of new technology to communicate age-old feelings and lessons
Michael R. Berman, M.D.
Associate Clinical Professor
Department of Obstetrics and Gynecology
Yale University School of Medicine
Attending Physician, Yale-New Haven Hospital
Infertility, pregnancy loss, neonatal illness and subsequent death are among the most painful losses we can experience. Each year there are more than 500,000 pregnancy losses in the US—more than 25% of all pregnancies end in loss. The objective of this project is to design, implement and maintain an Internet Web site devoted to documenting this condition and to help heal the grieving and other aspects of loss related to pregnancy wastage and demise of children.
Hygeia was the Greek goddess and guardian of health, daughter of Aesculapius the god of medicine and healing and sister of Panacea. Hygeia is meant to be an interactive online journal with an approach to healing through the avenues of the mind and the spirit. It started out with a volume of original poems of grieving on a private dial-in bulletin board, expanded to the Internet, and grew to include a monthly journal of medical information about pregnancy loss with an extensive reference and resource area. There are a "Grieving and Sharing Registry", a collection of sonograms or pictures, and a separate registry for caregivers.
The "Journal" has had a very favorable response from its readers. After seventeen months online, there have been more than 15,000 visits to the site and over 800 registered users, all of whom have lost pregnancies and many of whom communicate with each other by e-mail. Hundreds of stories of grieving and loss have been published. Hygeia has received numerous commendations and awards, but more importantly, it appears to have fulfilled its mission.
The challenge for Hygeia is to become more accessible and accepted as the major resource for those who have undergone the tragic loss of a pregnancy or a newborn child. Currently, the population at highest risk for pregnancy loss is also least able to access and use the Internet. Hence, a plan is underway to reach this medically underserved population, and simultaneously give access to Hygeia while bringing to them the advantages of contemporary technologies in a friendly, human-computer interface.
Among the medical Web sites now available online on the Internet, Hygeia provides an unique area where a visitor may feel and obtain solace through the medium of poetry, share feelings with others who have lost pregnancies or newborns, and learn from authoritative sources about the medical problems associated with pregnancy loss. The success of this site should indicate the appropriateness of Web sites for interaction with patients and could become a paradigm for online emotional support.
Follow this link to visit Hygeia: http://www.hygeia.org
Selected Poems
Cameron
I no longer see the stars; I am the stars.
I no longer breathe the wind; I am the wind.
I am the sweet smell of honeysuckle after an
Evening rain.
I am the dew on the rose petals in early
Morning.
I am harmony and I am peace.
I am love.
In sorrow, my mother and father cry,
But they need not fear. For I am strong.
My heart is whole and in union with my soul.
I understand my fate and I smile.
For nature's will is my destiny
And my guide through eternity.
1990
After years of infertility, Cameron was born only to die soon after birth of congenital heart disease. Unlike most forms of congenital heart disease, Cameron's was inoperable and fatal. His courageous parents were with him every moment of his short but love-filled life.
Amaurot
"All we know
Of what they do above,
Is that they happy are,
and that they love."
—Edmund Waller
If I could wish myself a dream,
It would be to retreat for a lifetime and hide
From a world of unjust suffering
Where mankind's afflictions and pains reside.
I'd labor to quarry limestone and granite
To fashion for my very own
A sanctuary to spend infinite years;
Eternity would now be my home.
I'd cultivate gardens of forsythia and violets,
Plant olive trees and harvest grains;
Grow apple orchards and grape vineyards,
From their full bounty would I be sustained.
Of lyres and harps there'd come splendid music,
Beautiful children would dance and be gay.
Sadness and crying would never bear witness,
Illness and sorrow would remain far away.
You'd be the first to visit my home,
Sweet child whose earthly life has been taken.
For here you would live and love and be blessed,
With God at your side, your eternal beacon.
1993
Amaurot is the fictional capital of Utopia. I wrote this poem in memory of a child born with a most devastating birth defect who died shortly after birth, and dedicate it to all children who have died.
Michael R. Berman, M.D.
©Copyright 1994
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