Online since 1995 and now reintroduced in 2018, Hygeia® for Perinatal Loss today is committed to the promise of its original mission to comfort families who have endured the tragic loss of a pregnancy or newborn child. Hygeia® has established and maintains a global, in-kind caring community in which thousands have participated and shared their stories of loss and hope. Here at Hygeia® for Perinatal Loss you will feel a sense of "belonging" and a safe place to share your thoughts.
Each year in the U.S. 30,000 infants die within the first 28 days of life. (1 in 144) and 25,000 (1 in 123) are stillborn. One in five families experience the pain of miscarriage (approx. 900,000). The impact of these losses is great, affecting parents, surviving siblings, grandparents, extended families and friends. Talking to one's health care provider and accessing the full range of physical and psycho-social support required is often a challenge. Although bereavement support is available by mostly branches of national organizations, the support is fractured and difficult to access. Families reaching out for support, or experiencing a recent loss, require support which is available when they need it, not when the monthly support group meets. Families desire and require support that is tailored to their specific needs. For example a family who has lost a child and is considering conceiving again or coping with subsequent pregnancy has very different needs than a family trying to make decisions regarding funeral arrangements for their recently departed child. All individuals searching for solace should have access to appropriate resources.
Hygeia® brings these resources to those in need using three domains:
A large international database of families who have lost a pregnancy or newborn child
Stories of loss and hope
When you Join Hygeia® for Perinatal Loss, you will be able to participate in an exchange of stories and thoughts on message boards and in a supportive private, international e-mail community between those who have experienced the grieving of a failed pregnancy, fetal demise, stillborn infant, perinatal, neonatal and early childhood loss or genetic abnormality leading to pregnancy termination. This is the Hygeia Family.
Hygeia® for Perinatal Loss began its online presence on 1995 and grew to become the largest online database of its kind-over 30,000 families-online, and by virtue of its size, the Registry permitted other to find another parent with a very similar loss as their own.
"Reaching out and trying to make people more aware of the grieving that comes with any pregnancy loss or infant loss, is wonderful. And making a place for us to go, and share our experiences with people who will listen and understand is wonderful too. When I read all the stories about all the pain and heartache that is felt worldwide it saddens me but in a way comforts me knowing I am not alone. Strangers we may be, but yet we are connected by a common thread the loss of a child and that makes us all soulmates."
Hygeia® was taken off line for several years and now with renewed energy and a new, more current platform, Hygeia® is returning to the Internet in an effort to reconnect those who first joined and connect new families who might benefit from sharing thoughts with other new families as well as reach out to those who experienced losses up to 19 years ago to relate how they have been able to grieve, remain hopeful and endure.
There is Art as well as Science to caring for the parents of a child who has died, either before birth or afterwards. Countless mothers and fathers and those close to them silently grieve with little resolution over the loss of their pregnancies, newborns and children. Seeking reprieve from their sorrow, they cry and yearn for solace and hope, many times for years following their loss; cries that are but a muted weeping of despair as a child so longed for is not born, or is not born alive, or dies during childhood. Pained by these losses, their lives seem devoid of hope. The joys expected from normal childbirth and child-rearing turn to sorrow. We as physicians share with them in this tragedy as now the balance between caring for the well being of the child shifts to caring for the tolling physical well being of the mother and father, the agony of their emotional well being and that of their immediate family. The shadow of their grief will be indelibly imprinted in their minds and souls. Death may strengthen or threaten to tear apart the bonds of their relationships with friends, family and themselves. We, their physicians must recognize the impact of these losses, be the first responder in this time of need, and abet the healing process, no matter how long and difficult. The loss of a child brings to us pain that is primal and endures forever. Poetry enables us to ask why even when we already understand how. It permits us as as healthcare providers, witness to the frailties of our humanity, to abet healing through the very core of what makes us human, our language and our personal emotions. Following is a short poem I wrote that I would like to dedicate as a prolog to the original poetry that follows, to all parents and family visiting here today. It is entitled Tiferet.
In prayer we plead return,
And in dream, awaken!
We fall to stare at gleaned grasses
Scattered about forgotten fields,
Singed by a senseless lot,
And thirst to cry forever.
We will not be draped In the blanket of loneliness called solitude.
For deaf of song and absent of vision
Of who we are and who are our children,
Its veil will descend, then disappear.
We are "alive together".
The margin between breath and breathless
Is narrow, like twilight and darkness.
Moments of simple thoughts
Become ageless memories.
There is triumph to taste,
Love to embrace;
Havens of hope to inhabit.
Soon, the curtains of chaos
Will rise with the setting stars
As memories of joy
Bond with joy itself
And we will smile once more,
At last to breathe a painless sigh
Of what is love.
Michael R. Berman, M.D.
Founder and President
Wednesday February 26th 2020