Every baby deserves a 'Good Beginning'
Cedars-Sinai support group helps ease the way for anxious NICU families
For the baby who is born too soon or with a serious medical condition, the Neonatal Intensive Care Unit (NICU) at Cedars-Sinai awaits. There, infants get around-the-clock care from nurses, doctors and therapists whose sole goal is to help their tiny patients go home.
But what about the moms and dads, who instead of wondering about mundane things such as feedings and diaper changes, are plunged into a world of high-tech medical equipment, complicated treatments and, sometimes, an uncertain future for their newborn?
Enter Good Beginnings, a support group for the 45-bed NICU in the Maxine Dunitz Children's Health Center, on the 4th floor of the medical center. Founded in 1979 by a group of parents, the program offers a range of services to NICU families and caregivers. These include emotional, educational and some financial support while babies are still in the hospital and help for families who have brought their babies home. The goal of Good Beginnings is to help ease families through an experience that is often frightening and lonely.
"The reality is, as close and caring as your family and friends are, it's only the NICU families who truly understand what you're going through," said Linda Rosenberg, who has served as parent liaison for the NICU at Cedars-Sinai for the past seven years.
Rosenberg is a "graduate parent" of the unit. Her son, Jared, now 13, was born at 31 weeks - nine weeks before his due date.
"I woke up feeling crampy and weird and came to the hospital," Rosenberg recalled. "Two hours later, he was born."
Her son, who was immediately placed on a ventilator, was slow to breathe and feed on his own. He spent six weeks in the NICU. "In that time in the NICU, I got to meet other families just like me who were going through the same things I was going through," Rosenberg said. "It made all the difference."
Good Beginnings conducts weekly meetings for parents to talk with each other about their experience in the NICU, ask questions, share advice and offer hope and comfort. The Good Beginnings library, with an online catalog for parents to easily browse its holdings, carries a large collection of books on topics like prematurity, special needs, healing and bereavement. For parents with slim finances, the program may provide clothing, blankets, car seats and gas cards.
"The support that Good Beginnings provides our families is invaluable," said Selma Braziel, RNC, BSN, NICU nurse manager. "In addition to the NICU team members providing compassionate care and emotional support, it's gratifying to see graduate parents supporting other parents and encouraging them so they don't feel that they are alone."
Volunteers decorate T-shirts for the tiny babies, make Halloween costumes (see photo at left), and hold baby showers for families who, because of their infants' early arrivals, haven't had the chance to do so at home. In addition, volunteers take photos of the babies and their families and put them into albums on a CD.
"We also offer support for dads through the parent-to-parent portion of the program," Rosenberg said. "They're the ones making sure that the mom and the baby are OK and then they go duck into a stairway and cry for five minutes."
For families whose infants don't survive, Good Beginnings offers "Forever in our Hearts," a bereavement service. Along with inspirational talks and meetings with other parents who have gone through this painful experience, the service provides information on what parents can expect. There is even a gathering each March, where about 100 families come together to remember their losses.
"The families each bring a flower and they say the name of their baby and place the flower in a vase," Rosenberg said. "The vase is then brought to the NICU, and it's very moving."
Every year,Cedars-Sinai also hosts a NICU reunion, which typically draws about 600 people.
"We get everyone from a 35-year-old who's a NICU grad to babies who have just been released from the unit," Rosenberg said. "To call it joyous, that's an understatement."