Catholic Health World

Perinatal hospice fills care gaps for families facing prenatal, newborn death

Months before Miriam Hernandez gave birth to her daughter Nathalie she knew that her baby's life likely would be measured in minutes, hours or days. No matter how brief the allotted time, she simply wanted her daughter to know love.

"I never considered ending my pregnancy," Hernandez said, through a Spanish-speaking interpreter. "She was my daughter, and I was going to love her. I wanted her to experience human love, the love of a family."

Hernandez gave birth to Nathalie on Oct. 26, 2009, at St. Joseph Hospital in Orange, Calif.

"She had light eyes and was hairy all over. Only her thumbs were malformed," said Hernandez. Hospital staff made impressions of the baby's hands and feet for a family keepsake. A professional photographer volunteered his services at the birth and took the photos shown here. "The attention everyone showed us — it's hard to put into words, but it was a wonderful experience to have my baby," Hernandez said.

Exactly three weeks later, Nathalie died at home in Santa Ana in the arms of her parents and big sister. A complication of Trisomy 18, a chromosomal defect that occurs in about 1 out of every 3,000 live births and causes serious medical and developmental problems, took Nathalie's life. According to the National Institutes of Health, half of infants born with the condition do not survive a week. The prognosis varies with the individual, and Hernandez had been advised that Nathalie might not survive gestation.

At St. Joseph, the Hernandez family received comprehensive hospice care that started with the prenatal diagnosis and will extend through a year of grief counseling. The Perinatal Comfort Care Program helped Hernandez and her husband Christian develop a birthing plan that would make the birth an experience much like the delivery of a healthy infant. It provided music therapy to 4-year-old sister Hannah, and it trained the nurses that provided sensitive care in the birthing suite.

"In the past, all we could tell parents was 'Hang in there,'" said Suzanne Engelder, who helped develop the program in 2005 and serves as its coordinator. Nathalie was an exception in the perinatal hospice program because she survived to leave the hospital. Most patients are stillborn, or die within hours of their birth.

Closing a care gap
St. Joseph's program was born out of tragedy. In 2004, a baby boy, also diagnosed with Trisomy 18, unexpectedly survived childbirth.

"He lived a day, then two days. And then after four days, everyone started to panic, 'This little boy is living, and we have to discharge this family,'" recalled Engelder. "The parents felt like they were kicked out of the hospital and not prepared to deal with all of this. They felt like they weren't supported."

At that point, perinatal hospice was a new concept. Only two other California hospitals offered palliative newborn care, and then, only in the neonatal intensive care unit.

Engelder wanted to create a new type of hospice that would differ from other programs in two key ways. First, the program would provide constant support at every step from diagnosis through that first year of grieving. Second, it would keep babies with no chance of survival out of the NICU.

In the place of invasive, high-tech medical intervention, a newborn would be given comfort care. If a baby did survive to go home, there would be a seamless transition for the family between inpatient and outpatient hospice care.

"In the past, these babies were being whisked off to the NICU," said Engelder. "The NICU nurses were like, 'Why is this baby here? This baby is going to die. Why is this baby not with mom and dad?'"

Proof of life
Since its inception, the program has served 12 to 17 babies a year. It generally begins its work with families between the 20th and 24th week of pregnancy, when it is most common for parents to receive a prenatal diagnosis that their baby will likely die before, or shortly after, birth.

Once a family absorbs the devastating prognosis and decides to forgo aggressive care that may prove painful and would be futile for their baby, Engelder visits the family at home. There she helps the parents develop a birthing plan — a guide that conveys parental wishes to the medical delivery team. In the case of hospice babies, the instructions can include advance directives and do-not-resuscitate directions for the infant. It can specify that parents want their baby kept with them in a labor and delivery room, with siblings and grandparents attending a baptism or blessing ceremony.

"We talk about what resuscitation looks like in labor and delivery. Do we put on oxygen? Does the baby have a cleft palate? What does that look like? We do all of that education up front. We want to prepare you so you're not forced to make decisions in the moment when you're exhausted from having a baby." At any point before, during or after delivery, parents can request and receive aggressive medical intervention including NICU care for their infant, Engelder said.

These conversations with parents take a lot of time and tissues. "The key is you can never cry more than the parents," said Engelder, who also has worked in both an adult and pediatric hospice.

At a mother's 30th week of gestation, Engelder organizes a family conference where the parents meet the 12-person team responsible for their delivery. The group includes a chaplain who will be present at the birth and likely, at the death. Not a single doctor there bills for the family conference time. "That says something special about the culture here," she said. "That family conference is one of the most important things of our program because the message they get is, 'We care about you and your baby. We want to honor your wishes.'"

Not all physicians and nurses were quick to embrace all aspects of the perinatal hospice program. Some believed these pregnancies tax resources. One doctor dismissed the "Precious Print" hand and foot castings and the gathering of other mementos of the baby's birth as "a lot of fluff."

"I took great offense to that because those mementos — the footprints, the locks of hair, the clothing, the blankets, the armbands — all of those things are so important to the family. They proved that this baby lived. Maybe for moments, but it lived," said Engelder. "He apologized after one of his patients brought in that box of fluff to show him."

'Cry with them'
Another challenge in launching the program was to enlist nurses in the mother-baby unit to care for these families.

"Mother-baby nurses went into that nursing to take care of healthy babies, to teach moms how to breast-feed," said Engelder. "And now you are saying, 'You are going to take care of a dying baby.' That is a real shift."

Of the 85 nurses that mother-baby unit manager Terry Zeilinger supervises, some 15 have undergone training in perinatal hospice care, where they learned more about life-ending conditions, different ways to ease a baby's pain and how to communicate with families. "You have your special few who are passionate" about hospice services, Zeilinger said.

"We talk a lot about allowing the parents to parent in that short time — letting them participate in the bath, diapering and giving oxygen," said Zeilinger. "We also talk about how you don't have to be saying a whole lot. Just be there. Cry with them."

Zeilinger hopes more hospitals adopt a comprehensive approach to perinatal hospice services. "It's the right thing to do," she said, but she recognizes it takes a special sensibility and pragmatic compassion on the part of staff.

Engelder says caring for dying infants and their families makes one appreciate the joy and sacredness of life. "Who are we to say what a lifetime consists of? Some people could live 87 years and not have much impact on the world. Some of these babies live for moments, but their impact ripples out to the doctor and the nurse who goes home and hugs her kid. These lives have meaning and purpose."

Copyright © 2010 by the Catholic Health Association of the United States
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