mediarel.html

Two advocacy groups for parents of premature babies have joined forces to enable an innovative new conference to take place. Michigan based The Alexis Foundation and internet support group Preemie-L will present "Directions for the 21st Century: Bridging the Gap Between Parents and Professionals" to be held at the Radisson Hotel, Schaumberg (Ill.) on July 30-31.

The conference will bring together Preemie-L members from around the world and medical professionals who are leading their field in promoting genuine partnerships between families of premature babies and the doctors and nurses who care for them.

"Having an extremely premature baby is a terrifying experience," says Anne Casey, mother of a baby born 14 weeks early. "You go from having a normal life to spending all your time at the hospital, stressed out of your mind because you have this tiny tiny baby on life support and no way to know for sure whether the baby will survive or grow up to be healthy.

"The technology of neonatal intensive care can be overwhelming for parents, and the first few months are only the beginning. Rapid advances in medical care mean that more and younger babies can now be saved. More families than ever are caring for babies and children who may have long-term health problems. They need to find specialists to become partners and advocates in the ongoing care of their children."

The "Bridging the gap" conference breaks new ground in addressing these vital issues. The program will cover communication in newborn care units, a place where difficult and painful decisions sometimes have to be made, as well as grief issues for medical staff and parents. Parents can learn from experts how to negotiate the labyrinth of long-term medical care, and medical staff can become involved in parent-to-parent support systems like Preemie-L.

Keynote speakers for the "Bridging the gap" conference are Dr Frank Manginello, Director of Neonatology at The Valley Hospital, New Jersey and author of the new edition "Your Premature Baby" and Dr Guan Koh, Senior Neonatologist at Kirwan Hospital, Townsville, Australia who is leading a major research project investigating ways to improve parental experience in Neonatal Intensive Care Units.

"As far as we know, there is nothing else like this being offered anywhere else in the world," says Elaine Sayers, Director of The Alexis Foundation. "We are bringing parents and professionals together to chart new directions for the long-term care of premature babies and children and their families. The speakers have tremendous integrity. They are the agents for change that will see a new era in parent/doctor partnerships, combining forces with a global network of informed parents. This is a groundswell that will revolutionise the long-term care of some of our society's most fragile members."

For more information, contact The Alexis Foundation at (248) 543-4169, email infoconf@aol.com or view the conference web site at http://www.vicnet.net.au/~garyh/conf99.htm