Neonatology and the Rights of Families

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Bill Silverman

 

Introduction

Welcome to the NaRoF Website

In 1993, newborn specialist Dr. Jeffrey Maisals described neonatology as "a vast and uncontrolled experiment undertaken without informed consent and with possibly undesirable results." Ten years later we see the results of this experiment in the outcomes of our children.

The NAROF forum and mailing list were established to give voice to families raising impaired NICU survivors and to parents and professionals critical of current practices in neonatology. In other settings, such voices are often discouraged and suppressed.

We would like to ensure that when discussions concerning the hardships of life with a disabled child and/or the ethics of neonatology take place, they do so in an environment which allows parents and professionals enough compassion, empathy and support to express themselves with honesty. We also hope that by allowing professionals to participate in the discussions, they will better understand the human cost of raising a child who will never live independently.

Access to open forums dealing with preemie issues becomes restricted for many reasons. Some participants in these forums do not want to hear about the difficult situations many of us face or of the hard decisions some of us must make. They insist on speaking of God's will, judgment, blessings and punishments in response to our situations, and they offer canned sentiments that trivialize the pain of our children's lives and our own. A politically correct, "positive" attitude is often held in higher regard than medical evidence or personal truths. As a result, parents who participate in these forums must self-censor their messages or risk abuse and ostracism. Difficult discussions become sidelined and eventually end up taking place in private, denying us access to a broader community of like-minded families and professionals. It leads those whose children are newly diagnosed with lifelong problems of prematurity to feel alone and isolated. It leads to a conspiracy of silence about the social and familial consequences of NICU care.

It is our hope that this website will provide a safe place for open, honest discussion of NICU practices and the lifelong consequences they have had for our families.

There are two main active aspects to this group, one is an open international forum where people can discuss, post information or ask questions on the practice and ethics of neonatology. There are translators available for those posting in French to the forum, but these people are volunteers, so translations may take a few days, hence responses may be delayed. The forums can be found HERE and are available to the public, but we ask that regular posters and professionals working in this area, register with the forum.

The mailing list is not available to the public. Members who join choose to do so in order to discuss or learn about the more private and personal aspects of living with the life-long process of raising children who do not outgrow their prematurity linked disabilities.

Family Centered Neonatal Care

The Family Centered Neonatal Care Presentation by Helen Harrison sums up the motivation and beliefs of the people who make up the Narof Community.
(This presentation requires the installation of Shockwave Flash)

 

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