For most new mothers and families, the birth of a baby is a joyous celebration of life and a time of family bonding.
But about 3 percent of babies are born with birth defects, also known as congenital anomalies, according to the Centers for Disease Control and Prevention. These newborns are often whisked away from their mothers immediately after delivery to a neonatal ICU. The trauma becomes even more heart wrenching when the facility where specialized care is available is located in another state.
“One of the biggest dissatisfiers with mothers and families of newborns with birth defects is that they are often separated from their babies after delivery,” says Denise Donaghue, RN, MSN, coordinator of the Fetal Heart Program at The Children’s Hospital of Philadelphia. “These moms are incredibly stressed.”
To provide families of babies with birth defects the best birth experience possible, The Center for Fetal Diagnosis and Treatment at Children’s Hospital opened The Garbose Family Special Delivery Unit on May 20.
This unique eight-bed birth facility is dedicated exclusively to mothers who have received a prenatal diagnosis of a birth defect. The goal is to offer a family-friendly, supportive environment while improving outcomes of mothers and newborns with birth defects who need an emergent intervention, such as prenatal or postnatal surgery.
Integrated careSusan Shannon Amos, RN, MS, CNM
The Garbose Family Special Delivery Unit collaborates and coordinates with the Fetal Heart Program and Center for Fetal Diagnosis and Treatment to offer a team approach to care. The multidisciplinary care team includes experienced perinatal nurses, nurse midwives, and physicians who are experts in maternal-fetal medicine and surgery, reproductive genetics, and fetal imaging.
“From the time of diagnosis, throughout the surveillance of the pregnancy, through delivery, resuscitation, neonatal care, and long-term follow-up, there is a single team that delivers integrated care,” says Lori Howell, RN, MS, executive director of the Center for Fetal Diagnosis and Treatment.
All services are housed under one roof at The Children’s Hospital of Philadelphia, which provides immediate proximity to pediatric surgical facilities, the Newborn/Infant Center, and the Cardiac Intensive Care Unit. Diagnostics include ultrasound, fetal echocardiogram, and fetal MRI, as well as consultation services.
“We immediately get the reports and sit down with families the same day to give them all test results, our recommendations, and educational materials,” says Howell. “We provide expectant mothers and families with answers all in one day, all in one place.”
Families also have the opportunity before the birth to meet the nurses who will be caring for their babies. In many cases, families have chosen the baby’s name before delivery, and the staff will refer to fetuses and newborns by name.
Establishing standardsLori Howell, RN, MS
Howell expects that 50 percent of the mothers who deliver at the Garbose Family Special Delivery Unit will have an infant diagnosed with cardiac-related birth defects. The other half will have infants with other types of birth defects, such as congenital diaphragmatic hernia, gastroschisis, spina bifida, and twin-twin transfusion syndrome.
The care team hopes to standardize the care of these mothers and babies. Currently, there are no guidelines from the American College of Obstetricians and Gynecologists for the delivery of babies with specific types of birth defects, Howell says.
“With our unit and specialized team we hope to create those guidelines and set the standards of care for mothers and babies with birth defects across the country,” she says.
Nurses, nurse midwives optimize care
The distinct knowledge of eight certified nurse-midwives is bringing a special touch to the mothers and families of The Garbose Family Special Delivery Unit. As experts in optimizing the birth experience, nurse midwives partner with women carrying fetuses with birth defects to empower them and create the best experience possible. Nurse midwives participate in every phase of the prenatal and postnatal process, act as patient advocates, and attend deliveries as appropriate, with on-site specialized obstetricians as backup.
“Nurse midwifery is the perfect piece to insert into this high-risk arena,” says Susan Shannon Amos, RN, MS, CNM, a nurse midwife and the unit’s nurse manager.
The unit’s staff nurses are a special breed. They are all highly experienced in labor and delivery, and some are certified as bereavement counselors. All nurses complete a 10-week orientation that includes fetal diagnosis and treatment.
“Every mother-to-be has a vision of what she wants her birth experience to be like, but medical needs can get in the way, and what she wants for her birth gets put by the wayside,” says Amos. “We want to give back to these moms and families as much of the birth dream as they had prior to a diagnosis of a birth defect.”