When Emma and Sophia Spittle were discharged from Mass General for Children (MGfC), staff from the Neonatal Intensive Care Unit (NICU) lined the hallway to wish them well. Amid the waves and cheers, staff jingled tambourines and shook maracas as the twins and their parents, Mandee and Jeremy, headed home to Salem, Mass., after a 140-day hospital stay.
For NICU staff, August 2016 marked 10 years of moving into a new, larger space to celebrate these special send-offs and provide care for MGfC’s most fragile patients and their families. The new NICU first opened in August 2006. It quickly became a sacred space where staff and families shared life’s most difficult and beautiful moments and formed long-term bonds with one another. NICU staff support parents and care for babies at incredibly vulnerable or critical moments. In turn, families and staff often consider each other members of their extended families.
“Over the past 10 years, what we’ve learned, and what we continue to learn, is that it’s all about the people who work in the NICU,” said Serguei Roumiantsev, MD, PhD, medical director of the NICU and director of NICU Transport Services at MGfC. “We create a feeling of intimacy that fosters and nurtures long-term bonds with our patients and their families. We continue to be invited to birthday parties and other family gatherings for our patients, and for all of us, the NICU is an extension of our own families.”
The past decade has also brought changes that improve patients’ care and quality of life. The larger, quieter space in each patient room and in family areas allows parents to stay with their babies 24/7. For parents who can’t be at the hospital, cameras were recently installed at each bedside so parents can watch their babies remotely. Special medical equipment throughout the unit also allows staff to recreate the operating room, if needed. The exceptional level of care and support, however, holds strong.
Caring for premature babies requires a multidisciplinary team approach, as the Spittles received for Emma and Sophia. The twins came into the world via C-section at 27 weeks on May 24, 2014. Their due date wasn’t until August 4, 2014. At just two minutes of life, both girls were intubated and treated for a variety of medical concerns that commonly affect premature babies, including apnea of prematurity and bradycardia, or slow heart rate. They also struggled with breathing troubles and infections, and Emma endured surgery to correct a heart defect.
A multidisciplinary approach can help to ease worries and ensure premature or critically ill babies receive care for all of their needs. Care teams, like those that cared for the Spittles, often include neonatology nurses and doctors, social workers, occupational and physical therapists and pediatric palliative care specialists who help families navigate the world of modern medicine and cope with long hospital stays.“The goal of a multidisciplinary team is not only to provide excellent medical care for patients with complex needs, but also to create a family-friendly environment and provide support to parents along this long journey,” said Jeanne MacDonald, MD, a physician in the NICU who cared for the Spittles. “This team approach is a tremendous resource and because we meet with families regularly, parents are able to share their worries, their hopes, their dreams and their fears openly.”
Now 2-and-a-half years old, Emma and Sophia are doing remarkably well, considering their rocky start. Emma wears oxygen while she sleeps for central sleep apnea and continues to be seen by several MGfC specialists and the Down Syndrome Program. Sophia’s health concerns have resolved, although she continues to be seen at the Newborn Developmental Follow-Up Clinic.
“The girls have an unbreakable bond and their love and empathy for one another is profound. They are such happy girls and spread love and joy wherever they go,” said Mandee. “The NICU staff is simply amazing. They saved our girls and worked tirelessly to do so.”
The twins’ care, however, didn’t stop upon discharge. “The NICU staff and Palliative Care Service have continued to help our family navigate the medical system, making sure all of our girls’ needs are met,” said Mandee. “The doctors, the nurses and everyone else continue to support us, encourage us and provide guidance when we need it. Jeremy and I are thankful every day for the NICU staff.”