When a baby's life is short

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Richard and Pauline Hunter watched their baby girl in wonder as she lay breathing softly between them on a hospital bed. They stroked their newborn’s thick, jet black hair and touched her tiny feet. As Veronica looked at the world around her, the Hunters sang hymns. They told her about the family members she would meet soon. Her breathing became softer and softer.

Then Veronica quietly slipped away, back to the God who created her just nine months earlier.

Veronica was only two and a half days old when she died Oct. 17, 2014, but for the Hunters, every minute of her life was a tiny miracle.

Diagnosed at 20 weeks in utero with campomelic dysplasia — a rare, life-threatening condition that affects development of the skeleton and other parts of the body — Veronica was never expected to live more than a few hours past birth.

“I think it was a 50 percent chance she would make it out alive, a 97 percent chance she wouldn’t make it to her first birthday,” recalled Pauline, a parishioner of St. James Church in Falls Church.

Experts aren’t sure how many parents, such as the Hunters, receive a life-limiting prenatal diagnosis every year. In 2014, there were 5.82 infant deaths for every 1,000 live births in the United States. The leading causes were congenital malformations, deformations or chromosomal abnormalities, many of which could have been diagnosed before birth. A decade ago, there were few resources available after a life-limiting diagnosis. Most OB/GYNs recommended termination; an estimated 20 percent of patients continued their pregnancies without formal programs to support them.

But the number of perinatal hospice programs — or perinatal palliative care — has grown sharply as patients increasingly advocate for their own interests and receive support from their peers online. Hundreds of programs now offer comfort care for children in addition to practical and emotional support for families.

“Probably the most painful decision that women and their families make in life is what to do with the challenge of a baby with a poor prenatal diagnosis,” said Dr. Marie Anderson, director of the Kristen Anderson Perinatal Hospice Program at Tepeyac Family Center in Fairfax, where Pauline and Veronica were patients. “It goes way beyond an inconvenient pregnancy, because the vast majority of these babies are very, very wanted babies. Their parents want to be parents. And yet there’s this major challenge that stands in the way of their expectations and their desires.”

An uncharted path

When Tammy Ruiz Ziegler, a registered nurse, founded a perinatal hospice program in Fredericksburg in 2006, it was a foreign concept to her colleagues. Now, perinatal palliative care is considered a standard option in many neonatal intensive care units, she said.

Still, “there are only about 300 programs despite the U.S. having (nearly) 5,000 community hospitals,” said Ziegler, a parishioner of St. Matthew Church in Spotsylvania. “That is the area where change is needed.”

A 2015 article in the journal Prenatal Diagnosis states that only 37 percent of genetic counselors mention the option of continuing a pregnancy — even though researchers have found that 37 to 85 percent of parents would choose perinatal palliative care if offered.

“People are becoming comfortable with this as a model of care, and sooner or later, ‘oh, we don’t do that,’ is not going to be an acceptable answer anymore,” said Ziegler.

The reasons parents opt for this type of care are wide-ranging. “I think it’s a misconception that only extreme religious zealots choose this,” said Ziegler.“People decide to do it for all sorts of different reasons.”

But there is a common thread.

“Mothers and fathers want to be with their babies, especially when they are sick,” said Anderson.

She reassures parents that mothers will still receive “every benefit modern medicine has to offer,” and that their babies will not suffer.

Tepeyac is regarded as a pioneer in the field.

“They were doing perinatal palliative care before it even had a name,” said Ziegler.

After Anderson’s daughter died in a car accident in 2004, she found a new purpose in helping others struggling with the loss of a family member. Tepeyac made its program official, naming it after Anderson’s daughter and enlisting the help of others for non-medical support.

That includes people such as Father Stefan Starzynski, chaplain at Inova Fairfax Hospital, who patients often turn to for spiritual care. He’s witnessed grief and joy in the delivery room dozens of times.

“A baby can give more love in an hour than some people can give in a lifetime,” said Father Starzynski.

veronica web

Richard Hunter holds his newborn daughter after her birth. Veronica was diagnosed with a rare, life-threatening condition at 20 weeks in utero. SONIA PATTON TROCCHIO | COURTESY

Tepeyac also works with Paula and Richard Stryker, parishioners of St. Patrick Church in Fredericksburg, who founded a nonprofit, Embracing Grace, after their own daughter, Corrine, passed away 90 minutes after her birth. Embracing Grace helps negotiate funeral costs, arranges mementos such as footprints and photos after the birth, and helps parents work through fears about the pregnancy.

Families “know they are going to go down a path that is sort of uncharted,” said Paula, who turned to Tepeyac for her medical care after Corrine’s brain, heart and facial abnormalities were detected at a 20-week ultrasound. “No one can tell them how this is going to end, and it’s a feeling of extreme isolation.”

That feeling can increase when family members have “misplaced compassion,” said Paula, who has assisted about 25 families during the past five years.

“Everyone thinks that if you just terminate, it will be a shortcut through grief. It’s just not.”

“Finding people to support you can really make or break the entire journey,” she added.

In 2014, Veronica’s parents found that support at Tepeyac and their church, as they planned for a birth and a funeral at the same time.

‘She’s alive. She’s crying.’

At first, everything about the pregnancy seemed normal to Pauline.

That all changed after her 20-week ultrasound.

“After that, the prayers changed to, ‘I hope she can make it out alive. We just want to meet her,’ ” Pauline said. “You feel like you’re walking around with a time bomb.”

As Pauline was wheeled into her fourth c-section at INOVA Fairfax Hospital Oct. 15, 2014, Richard prayed that his wife would not experience any complications. He prayed that Veronica’s bones, likely brittle, would not break during the delivery. But there was no need for the pain-killing drugs on standby.

As the doctor pulled Veronica up, she let out a loud, normal newborn cry.

“I was amazed. ‘She’s alive. She’s crying,’ ” Richard recalled. He used a small bottle of water to baptize her on a nearby table, and then Pauline held the baby. Soon, he brought Veronica out to the waiting room, where their three children took turns holding her. The minutes ticked by: Hour one. Hour two. Hour three. Then Pauline stopped counting.

“She’s a fighter,” a nurse told them eventually. “You need to give her formula.”

The family then took turns feeding her from a bottle every few hours, staring into her dark brown eyes as she looked back. They held her upright every moment to ensure she was in a position to breathe properly because of the lack of structure in her chin and throat area.

They gave no medical interventions. “She just needed to be loved,” said Pauline.

Fr. Michael C. Isenberg, parochial vicar of St. Veronica Church in Chantilly, confirmed Veronica — an act the church encourages when a child is in danger of death. Father Edward R. Horkan, then a parochial vicar at St. James, came and administered the anointing of the sick. On the second night, a nurse propped the baby up in the bed so Richard and Pauline could get a little rest. Still, they took turns watching. They began to wonder if Veronica would beat all the odds.

“We didn’t know,” said Richard. “We thought maybe she’s this miracle baby.”

It couldn’t last. Still, “I think I was lucky. I think I was blessed,” said Pauline.

“I have never lived so intensely,” she said. “Two and a half days of intense living. It’s like being present at every single moment possible.”

hunter family portrait web

 

A family portrait  drawn by Veronica's sister Lucia

At the funeral, the children and the priest wore white. A family from St. James hosted a reception. Countless people told them they had heard about Veronica and were praying. Veronica’s three sisters still talk about her and draw her in family portraits — along with John Paul, their little brother adopted from Korea earlier this year.

“We’re a family beyond this life,” said Richard. “This communion of saints is so real.”  

 

Resource links

For comprehensive information about perinatal palliative care programs, go to perinatalhospice.org.

Tepeyac Family Center

Embracing Grace

Additional resources for infertility, miscarriage and infant loss

© Arlington Catholic Herald 2017

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