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When Tara Rojas of Newark decided it was time to start a family, she had a lot going against her. Type 1 diabetes had ravaged her organs, and in 2001 she had a kidney and pancreas transplant, which required a regimen of immunosuppressant drugs. She was also close to 40, but living without diabetes for the first time gave her a new perspective on life and made her determined to finally have a baby.
She ended up in the office of Yasser El-Sayed, MD, associate chief of maternal-fetal medicine at Lucile Packard Children’s Hospital, who carefully went over her options. “He was extremely communicative about his concerns but was also completely respectful of my wishes,” says Rojas. “The bottom line was it was up to me and whatever I decided, he would support.”
El-Sayed, a specialist in high-risk pregnancies, explained the possible complications: Her drug regimen was not a major concern, but because late-stage diabetes had damaged her blood vessels, there was a good chance of microvascular damage to the placenta that would prevent it from attaching to the uterus properly. There was also potential for a host of other problems ranging from preeclampsia to restricted fetal growth to hemorrhage during delivery.
Rojas persevered and became pregnant in 2004. A weak cervix, unrelated to her disease, forced her into the Hospital for seven weeks of bed rest when she was five months pregnant. Karly was born at 27 weeks, weighing just 2 pounds and 8 ounces, and spent 10 weeks in Packard’s Neonatal Intensive Care Unit (NICU) until she was strong enough to go home.
Today, 7-year-old Karly is busy with tennis, ice skating, piano lessons, and swimming. “I call her my miracle baby,” says her mother, a program manager for the pancreatic islet program at the University of California, San Francisco. “I honestly don’t think I could have found that level of care and professionalism anywhere else. Packard’s commitment and follow-up in tracking her development has been incredible.”
Karla and Tara
While Rojas’ situation was more complex than that of most expectant mothers, the expertise and personalized attention she received is part of the day-to-day operations of Packard’s program in maternal-fetal medicine, which coordinates services for complicated and high-risk pregnancies.
From pre-conception counseling to genetic testing and targeted ultrasound all the way through delivery, multidisciplinary teams of specialists focus on women who need specialized clinical and consultation services, prenatal diagnosis, or intensive newborn care. Packard is renowned for its skill in caring for pregnant women with serious disorders, such as epilepsy, preeclampsia, heart disease, lupus, and diabetes, as well as women at risk for preterm labor and cervical insufficiency—situations that endanger a woman’s health and that of her baby.
“The idea is to provide comprehensive services for both the mother and the infant that are streamlined, coordinated, and family-centered,” says Maurice Druzin, MD, the Charles B. and Ann L. Johnson Professor and chief of maternal-fetal medicine. “These are the patients who are at very high risk for a specific set of complications and who require specialized care.”
Maternal-fetal medicine offers a wide range of services for mother and baby under one roof, coordinating multidisciplinary teams of obstetricians, neonatologists, social workers, surgeons, and other specialists from across Packard Children’s and the adjacent Stanford Hospital. Teams meet on a regular basis to review cases and coordinate care.
“You can’t separate the maternal from the fetal in these complex situations,” says Druzin. “There are few places that integrate these specialized services as closely as Packard does.”
At most other children’s hospitals, about 1 to 2 percent of cases are considered high-risk pregnancies or difficult births. About 15 percent of births taking place at Packard fall under this category, according to Druzin.
They include mothers like Rojas, who faced complications from previous disease and a premature delivery, as well as women dealing with unexpected problems.
“It’s an evolving subspecialty,” adds El-Sayed, “but our focus remains on integrated care for any complications that can arise during pregnancy and delivery. Our goal is to help make a smooth transition from fetus to baby, no matter what the conditions. And our care doesn’t end after the baby is born.”
Of the approximately 4,200 deliveries that take place at Packard Children's each year, nearly 20 percent require a stay in the NICU because of premature development, cardiac anomalies, infection, respiratory problems, or other concerns, says El-Sayed, even though the mother may be fine. A mother giving birth to premature triplets, for example, may recover and be able to return home right away even though her infants will require hospitalization for many weeks.
In 2010, Packard opened the Center for Fetal and Maternal Health to provide even better care coordination for mothers facing certain conditions—fetal anomalies and specific maternal issues likely to cause severe problems for the fetus.
“These expectant mothers require extensive assessments, counseling, and follow-up appointments. They need to be seen more frequently, sometimes by as many as four or five different specialists as their pregnancy progresses,” says Susan Hintz, MD, medical director of the Center and an Arline and Pete Harman Endowed Faculty Scholar.
Because of the wide range of complex cases seen at Packard Children’s, and the mutual understanding among caregivers about the importance of a coordinated approach, the Center has representation from nearly every specialty area at the Hospital. Teams of diagnostic, medical, and surgical specialists meet routinely in conference to review cases and plan multidisciplinary management and interventions.
From initial referral for prenatal counseling to follow-up visits, two dedicated Center for Fetal and Maternal Health coordinators act as a single point of entry, improving communication with patients and preventing duplication of services.
Demand has increased more than 30 percent since the Center opened, and about 45 to 55 expectant mothers carrying fetuses with complex problems are followed at any given time.
In addition, the Center helps to provide emotional and psychological support for parents facing what may be the most stressful time in their lives. A medical social worker is assigned to each patient to assist the expectant mother and family starting at prenatal diagnosis and continuing throughout the baby’s hospitalization. “From the very start we try to help families to understand and prepare for the challenges they may face,” says Hintz.
To help screen and serve more families, Packard Children’s maintains a network of perinatal diagnostic centers and neonatal intensive care services at community hospitals in Mountain View, Fremont, Salinas, and Santa Cruz. These centers provide a full range of analytic, screening, treatment, consultation, and counseling services and can refer women and newborns to Packard for specialized care and planning in high-risk situations. Druzin calls it “a rich network of community enterprises.”
“It’s a relief for a mother to be able to stay in her own community and with her own obstetrician, especially during a difficult pregnancy,” says El-Sayed. “We provide specialized care and offer consultation on-site so they don’t need to drive all the way to the main hospital.”
Each regional center is staffed by a Packard specialist in maternal and fetal medicine who works directly with community obstetricians to diagnose and consult on difficult pregnancies, coordinate prenatal and neonatal care, or triage cases that may need to transfer to Packard Children’s. If appropriate for the infant’s diagnosis, it is often less stressful for a mother to deliver and her baby to receive initial treatment at their home hospital, and then receive outpatient follow-up care at Packard with appropriate subspecialists, points out Hintz.
Center services also include state-of-the-art imaging technology and genetic counseling, providing important resources for families grappling with difficult circumstances.
“We move mothers to Packard only if we can’t give them the care they need right there, and we encourage them to return home while they’re convalescing,” says Druzin.
“We want to keep families together and close to home whenever possible.”
Packard’s Mid-Coastal California Perinatal Outreach Program provides obstetrical education to community health care providers to promote the highest standards of patient safety and family-centered care in these affiliated hospitals. Speakers, workshops, conferences, and peer reviews are offered to community physicians and nurses, as well as site visits and compliance reviews.
Packard Children’s has extended its services further at Dominican Hospital in Santa Cruz, which maintains an operating room in the labor and delivery area and a 20-bed NICU for premature or sick babies. Packard neonatologists—who live in the community—care for infants in the NICU, and those requiring specialized neonatal care can be transferred easily between the two hospitals.
That process was a lifesaver for Jaime Shaffer of Santa Cruz, who started leaking amniotic fluid when she was just 11 weeks pregnant with twins. She was monitored carefully at Dominican’s perinatal diagnostic center and then transferred to Packard Children’s for observation and bed rest. When Tyler and Lucas were born at 30 weeks—each weighing just over 3 pounds—they spent their first three weeks at Packard, followed by four weeks in the Dominican NICU.
Now 17 months old, the twins are healthy, happy, and up to normal weight, says Shaffer. “There were so many unknowns, but the communication was clear and the transfers were easy,” she adds. “We received the best of care at Packard and the outcome was a million times better than it might have been if I had been seen somewhere else.”