JF&CS News Fall 2012

papa and preemieConnie's* daughter was born extremely early and spent the first three months of her life at the Brigham and Women's Neonatal Intensive Care Unit (NICU). Anxious and exhausted, Connie struggled to learn about her daughter's medical issues and how to navigate the complicated and confusing world of prematurity. The stay in the NICU was a rollercoaster, but eventually Connie's baby was released from the hospital. Connie was excited to bring her home and, at the same time, terrified that she would not be able to take care of her adequately. "I had a lot of conflicting questions and emotions. Most of all I felt a large and seemingly permanent knot of pain, love, fear, and hope for my daughter," said Connie.

Before she was sent home, Connie learned about a special support program for preemie parents: JF&CS Fragile Beginnings. Offered through the JF&CS Center for Early Relationship Support® (CERS), the Oliver, Ian and Serenity Wolk Fragile Beginnings program is designed to improve the lives of parents of premature infants through support, education, and connections to community resources.

The Fragile Beginnings Family Liaison, who began meeting with Connie in the hospital and continuing at her home, helped Connie make practical plans, understand her emotional journey, discover her unique baby, and alleviate her worries. "She helped me see my baby as my beloved daughter who was proceeding happily on her own path rather than as my beloved daughter who was a medical patient with special needs lurking around each new developmental milestone," said Connie. "As much as the doctor who delivered her or the medical staff of the NICU who kept her alive, Fragile Beginnings gave me my daughter," said Connie.

More than half a million babies are born preterm in the US each year with 160 preemies born each week in Massachusetts alone. Because of their early birth, these babies are especially vulnerable and often require inpatient medical care before they can go home. However, no standardized follow-up procedures exist to ensure that preterm babies and their parents receive the emotional support they need after they leave the hospital. "Prematurity extends far beyond the NICU," said Kate Weldon LeBlanc, Associate Director of CERS. "Our model that bridges hospital and home is a very innovative one."

In addition to the hospital and home visits, Fragile Beginnings hosts free monthly in-person and phone support groups for parents whose babies were born prematurely or have spent time in the NICU. In 2010, CERS launched the parent-led Fragile Beginnings Preemie Parent Alliance, which is open to all preemie parents, providers, and advocates in New England. All of these services are available at no cost.

Fragile Beginnings blossomed out of initial ideas that Peggy Kaufman, Director of CERS, heard years ago from a small group of preemie parents, including Marla and Jeffrey Wolk, whose twin boys were born 14 weeks early and spent their first 106 days in the NICU.

"With Peggy's leadership, Fragile Beginnings has provided families a safe place to fall, a comforting resting spot for cloudy and weary emotions, and a hand to hold and guide them to ensure that no other family needs to travel this road alone," said Marla. The program is made possible by generous donors including the Wolks, Weil Foundation, MedImmune, Boston Bruins Foundation, and Klarman Foundation. Fragile Beginnings is named in honor of Oliver, Ian, and Serenity Wolk.

"I hope Fragile Beginnings will be able to continue to be a touchstone for families so wherever they are on their journey or whatever challenge they encounter, they can reach out and know that they aren't on their own," said Marla.

* Name changed to protect privacy.

Fragile Beginnings Phone Support
Join us on the first Tuesday of every month
12:00 noon EST

Fragile Beginnings Conference: The Journey through Prematurity
From the NICU to Early Childhood
November 11, 2012
9:30 a.m. – 12:30 p.m.
JF&CS Headquarters

For more information, call 781-647-JFCS (5327) or email your questions via our contact us page.