The NaRF dual-purpose forum / mailing list was established because too often the voices of families raising impaired NICU survivors and/or parents critical of current practices in neonatal care, are discouraged, drowned out, 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 discussion list, 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 to us 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, forum and mailing list will provide a safe place for open, honest discussion of NICU practices and the lifelong consequences they have had for our families.