The pain – and surprising beauty – of hospice care for babies

Washington D.C., Apr 21, 2016 / 02:01 am

They're the last words any expecting parent wants to hear. But though it's rarely discussed, thousands of couples every year get the news: that their unborn child has a severe, life-threatening condition.

And what's more, few receive the resources, support and information they need to carry their child to term.

"In your mind you have this outcome that you're going to have a baby," said Dianna Vagianos  Armentrout, "and then you find out you will have a baby, but it's going to die."

Dianna's daughter, Mary Rose, died shortly after her birth in 2014.

Although the process of her daughter's pregnancy, birth and death was difficult and painful, there was still beauty and even joy, she told CNA. In talking to other parents who offered counsel and to Isaiah's Promise, a peer support ministry for parents facing difficult prenatal diagnoses, Dianna found peace.

"The way that they acknowledged the unborn child and the way they gave us permission to still be joyful, even though the child would probably die," she said.

"If I could give one thing to a pregnant woman it would be that it's going to be okay," Dianna said, offering her own advice to parents facing a life-limiting prenatal diagnosis for their child. "The baby's going to do what it's supposed to do."

"For everyone I know (in the same situation), the baby has died so peacefully."

According to data used by the CDC and NIH, as many as 1 in 3 pregnancies have some kind of congenital anomaly, and birth defects account for one in five infant deaths. Some defects can be detected on routine prenatal ultrasound screenings, or with a screening of the mother's blood. Various conditions can also be diagnosed through screening procedures such as amniocentesis, which takes a small amount of amniotic fluid from the womb, high-resolution ultrasounds or echograms. There's also a chorionic villus sampling, which takes a small amount of a baby's placenta for examination. If results come back abnormal, parents may be referred to a specialist for diagnosis, and in some cases, prenatal treatment, or preparation for treatment after birth.

However, some conditions have no cure.

The percent of babies who are terminated after their parents receive a prenatal diagnosis varies from condition to condition, but for some diagnoses with poor prognoses, such as Trisomies 13 and 18, anencephaly and certain kidney diseases, termination rates can be as high as 80 or 90 percent of those diagnosed.

At 21 weeks of pregnancy, Dianna received Mary Rose's diagnosis: the baby had Trisomy 18. Like other trisomies, such as Down Syndrome –Trisomy 21– and Trisomy 13, Trisomy 18 develops when a baby inherits an extra, third, copy of a given chromosome – in this case, Chromosome 18. The extra genetic information results in heart and digestive system defects, difficulty breathing, microcephaly, and a range of physical malformations. Nearly three-quarters of children diagnosed with Trisomy 18 die in utero. Of those infants who survive to birth, most die within hours, days or weeks of birth. Less than ten percent of children with Trisomy 18 survive past their first birthday.

When doctors examined Mary Rose during a routine ultrasound visit, they found several anomalies, most notably that Mary Rose was small, and her fingers were crossed – a marker for Trisomy 18.

"As soon as they did the ultrasound, that's when they offered me an abortion," Dianna told CNA.

While providing information on termination, "that's the first time I felt her move," she recalled. Pro-choice politically but not personally, Dianna decided not to terminate Mary Rose because of the diagnosis. "She was my child; whatever condition she was in, that was going to be good enough for me."

As the pregnancy continued, Dianna consulted with her Eastern Orthodox priest and others to prepare for Mary Rose's birth and the range of outcomes for children with Trisomy 18 – and to prepare for Mary Rose's death. For their family that meant having her birth at home so that they would be able to prepare Mary Rose's body for a funeral themselves, rather than have her be sent to the morgue, as would be required with a hospital death in their home state of Virginia.

Looking back, Dianna says that Mary Rose's life and death were "very peaceful." The complications of Trisomy 18 caused breathing difficulties. "We didn't even know which second it was that she stopped breathing," Dianna said. "There was no suffering; we were the ones who were suffering."

However, her most severe regret, Dianna told CNA, is that she didn't seek out perinatal hospice – which focuses on helping newborns and infants die comfortably and peacefully – rather than pediatric hospice, which provides end-of-life care for children. While she had the support of doctors, Dianna still feels that her experience with pediatric hospice was difficult.

The fact that we offer a plan – something for the babies even though they have a very short life – is reassuring for them and it opens a hope.

Dianna also wishes that families, and mothers in particular, facing difficult prenatal diagnoses could find more support from their communities. People should not be afraid of not knowing what to say or upsetting the mother by mentioning the baby, Vagianos said. "The mother is already upset and the mother is never going to forget that baby."

Despite the difficulties she faced with pediatric hospice and in finding community support, Dianna maintains that she found healing through Mary Rose's death and through the "blessing" it was to come to know her daughter. She is grateful, she says for support she found online and for the healing she's experienced by detailing her experiences in journals, on her blog and through an upcoming book on their family's experience.

"People need support at diagnosis," said Tracy Winsor, Co-Founder of Be Not Afraid, a comprehensive peer ministry to parents facing difficult prenatal diagnoses.

Winsor told CNA that many times when parents face a challenging prenatal diagnosis, they do not know anyone who has been through a similar situation before or have the resources and support they need. When offered support and information on perinatal care and options for their child, parents are more likely to carry their child to term.

She explained that within Be Not Afraid, they provide a variety of services in order to support parents facing poor prenatal diagnosis and seeking to carry their child to term. In addition to perinatal hospice and peer support, Be Not Afraid also helps parents plan the birth process, making sure they have informed consent for any treatment options available as well as a plan for supporting the child for as long as he or she lives. If parents wish to seek extraordinary care or surgery to address congenital defects, Be Not Afraid helps them find out where procedures and kinds of care are available, if those options are not offered in the family's hometown.

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Be Not Afraid has also been able to help arrange other kinds of support as well for families. "We've been able to help get Catholic clergy scrubbed and into (operating rooms). Catholic clergy who were able to lead the surgical team in prayer. Catholic clergy that were in there baptizing if the parents want it."

The range of care provided by Be Not Afraid, she said, is in a way, an extension of pastoral care and the corporal works of mercy. Winsor pointed back to one of their first mothers, where Winsor and others helped to arrange a birth plan and provide support at the hospital for a mother whose baby was stillborn.

When taking a break to get coffee, one of the nurses approached Winsor and told her "'Oh my gosh, I had no idea you were a service I just thought that mother had the best friends.'"

Winsor also commented that a large part of providing support to families is in providing information. "Patients don't always get information on what is basic care," she said, adding that many families do not receive the full range of information on options for caring for their child and their condition.

As a result of the information and support that they provide, Winsor said she's seen changes in the medical community where Be Not Afraid works.

"I think the medical providers are happy to know that our families have been well-supported and well-prepared," she commented, adding that most of their referrals now come from within the medical community. Winsor added that she's also seen personal changes in medical providers who may not have initially supported a family's decision to carry their child to term.

"We've had physicians who've been less than supportive show up at a birth and weep, because they encounter the humanity of the baby through the parents – who are well-supported."

The experience of bringing their child to term, particularly with information and support for the birth and death process, can change a parent's perception of their diagnosis. "One of the things we find is that parents come through the diagnosis and often their first instinct and certainly the instinct of everyone around them is that the train wreck is going to be the birth," Winsor said.

"What we say is that the train wreck is the diagnosis." Winsor said this maxim has been borne out by parent feedback."By and large, the parents will tell you that the worst day was diagnosis and the birth, even if it means a death, is better than diagnosis."

Elvira Parravicini, MD, Assistant Professor of Pediatrics at Columbia University Medical Center, is director of the Neonatal Comfort Care Program at NY-Presbyterian/Columbia University where she helps provide care for newborns with "life-limiting conditions." She described to CNA the medical support she and her program aim to provide patients with poor prenatal diagnoses and their families.

Dr. Parravicini said she started developing a set of resources for infants facing death when she came across mothers in her own practice who wanted to continue their pregnancies despite their child's diagnosis.

"I'm their physician– I need to do something for them," she said to herself at the time.

Care, she continued, focuses on both making the child comfortable, as well as offering support and care for the baby's parents. Dr. Parravicini and other physicians at the Neonatal Comfort Care Program help to put together a unique nursing and medical plan for infants that can be used no matter how short or long a child's life is. The first goal is to provide comfort for the babies, which includes bonding with the family, being warm, and if it is possible, being fed.

"The fact that we offer a plan – something for the babies even though they have a very short life – is reassuring for them and it opens a hope," she said.

Hope, for families facing a difficult prenatal diagnosis, is an important part of the parental process. "The idea of having your child die in your arms is devastating – it's almost unimaginable," Dr. Parravicini said. "What our program does is not only be following this program we make babies' lives comfortable, but also supporting the parents in their parenthood."

Supporting patients in birth and in death places the focus on what is truly important: the baby's life. "Before death there is life," Dr. Parravicini mused. "All our care, our concern, is concentrated in those minutes, hours, days, weeks of life."