25 Years and Counting!
Imagine an organization formed to help parents experiencing a pregnancy crisis get in touch with another parent who has had a similar experience. This experience might be bedrest, preterm labor or birth, or sadly, the death or stillbirth of a precious newborn. Whatever the experience, a person needing to talk would be able to connect with a parent who had a similar experience, and was now available to help. A parent with enough time past their own experience that they were ready to listen to another parent's concerns. Imagine that this service was available, 24 hours a day, every day, and was entirely run by parent-volunteers. Does this sound like an internet group that puts people together through e-mail or chat rooms? Actually, this group, Neo Fight, has been in existence for just shy of 25 years, and is based on parent support through a special Telephone Listening Line at (317) 255-5242. And yes, we've expanded to the web as well. Please check us out at Neo Fight.
Twenty-five years ago, in 1976, Charlotte Deeter and Cindi Hankins met in a local Indianapolis hospital, where had both been hospitalized for unexpected pregnancy complications. After the premature (but healthy) births of their two children in February 1976, the women stayed friends. Even more so, they continued to support each other through their children's NICU stays. They realized the value of parents supporting parents, and within a few months, Neo Fight was formed. Garage sales, flower sales, recruiting other families, plus help from the Neonatal Nursery staff helped to get Neo Fight established in Indianapolis. Soon, Neo Fight became the first parent support group in the United States to have non-professionals working in the NICU supporting parents with babies in special care. People began to hear about Neo Fight and wanted to get involved, and soon a new a new parent support program called Listener Training began.
Our saying at Neo Fight is "We Would Like to Listen to You". Indeed, women and men who go through our training course are called Listeners. This title reflects what our most important service is - to give a person who calls someone to talk to, a non-judgmental Listener, to help get through their crisis. Our Listening Line, (317) 255-5242, is available 24 hours a day, by pager. One of our Listeners volunteers to keep the beeper for a month or two and carries it with her everywhere. The beeper goes to soccer games, church, stays by her bed at night, and once, even got me out of line for "The Hoosier Hurricane", a local roller coaster, to answer a page! Calls to our Listening Line are returned quickly, usually well within one hour, so that the person calling gets to talk to someone right away. Some people call the Listening Line just a day or two after their baby dies or goes into the special care nursery, or after they go on bedrest. For others it way be a week, or even months afterwards, when they are ready to talk to someone, perhaps when well-meaning friends and relatives begin urging them to "get on with their lives". Sometimes a Doctor, Nurse, or Social Worker will call on behalf of a parent.
After speaking to the caller, we attempt to make a match with the Listener who has the most similar situation to the caller. We ask our Listener is she is able to take a "Referral" from the beeper. This Listener then calls their "Referral" - and the relationship begins. Our Listeners are there for the parents who need them, to talk with them through what might be their darkest days, and possibly, still be talking with them as their lives return to a 'new' normal, when the good days begin to outnumber the bad. Some people will only want to talk with a Listener a few times; others may truly develop a close relationship with their Listener, meet for lunch, or come to Neo Fight Meetings together. I remember calling Neo Fight as a newly bereaved parent, desperately needing someone to talk to, and being put in touch with a woman, Helene, who is now my closest friend. We currently serve together on the Neo Fight Board, and we have been there for each other through several subsequent pregnancies, international adoptions, and the everyday challenges of raising children!
Today, Neo Fight remains an active organization in Indianapolis. We have support group meetings around the city every other month, publish a fantastic newsletter called Parents in Touch, maintain our website, run NICU Parent Support groups at local hospitals as needed, and speak to the School of Nursing and the Medical Students at Indiana University Medical Center twice a year. Once a year, we have a Spring Member Luncheon, a December Cookie Exchange, and around Thanksgiving week we deliver Hospital Baskets to all 11 area Indianapolis Hospitals, filled with Neo Fight information, preemie clothes, and treats for the nurses. We are still an all-volunteer organization, today with over 60 trained Parent Listeners.
As the Spring of 2001 approaches, we are again planning for our annual Listener Training Course. Women and men who feel that they are ready to begin supporting other parents will take a weekend training course from Doctors, Nurses, Genetics Counselors, Social Workers, and, especially, Parents who have 'been there'. They will learn how to be Listeners, and where to find resources to help the parents they will be talking with. We stress to our Listeners that we are not there to give advice, to recommend health providers, or to focus on our opinions, but to help the parent find their own special way through their crisis.
Times have certainly changed, for 25 years ago the idea of a hospital support group was very novel indeed! There were not many places where families could turn to for help during a perinatal crisis. Today, (largely due to groups like Neo Fight, I think) most large hospitals have support systems for parents because they have recognized the need. In addition, the internet puts parents in touch with current information 24 hours a day. Today, many of our Listeners and Referrals contact each other via the convenience of e-mail, and we use the internet to help locate support groups for families with very particular needs or conditions. However, we still feel that our basic service should always be available - that of being able to talk with and listen to a parent in their time of crisis.
Being involved with Neo Fight has been a truly rewarding experience. It has allowed me to give back to others in memory of my son Luke, as an appreciation to those who reached out to help me when I most needed to talk to another mom who understood what I was feeling. I am proud to serve as the current President of Neo Fight. Please contact me at any time if you would like information, would like to talk, or would like to be added to our mailing list!
NeoFight was recently in the press
Neo Fight: http://members/tripod.com/Neofight.