Reprinted with permission from The Buffalo News

 

FOCUS: NEWBORN HOSPICE CARE

Handling darkness at dawn of life: Hospice for infants

With so many children dying immediately beforeor shortly after birth, program helps families cope
By Henry L. Davis

Updated: 10/23/07 9:03 AM

Like any new parents, Kelly and Frank Izydorczak hugged their newborn, took pictures and snipped off a lock of his hair as a keepsake. They also fought hard not to cry.

 

The East Aurora couple had continued the pregnancy despite learning months before that Devin suffered from a lethal condition. They would have a few hours, days or weeks, at best, to hold and kiss the baby yet were determined to make the most of it.

 

As things turned out, he was born dead.

 

Their kind of grief was once largely neglected. People like the Izydorczaks were left to deal with their sadness alone and were encouraged to just move on, even though more children die immediately before or shortly after birth than at any other time in childhood. That's changing.

 

Just as hospice grew to help terminally ill adults, the medical community now is paying greater attention to the plight of families confronted with the end of an infant's life.

 

"There are so many women who never saw or held their babies who still ache to feel that baby in their arms," said Kelley M. Clem, director of a new service at the Center for Hospice & Palliative Care called the Caring Hearts Perinatal Program.

With advances in medical technology, doctors can diagnose lifethreatening conditions earlier and keep terminally ill babies alive longer, presenting families difficult decisions.

 

Most parents choose an abortion after a diagnosis that their developing fetus likely will die. But at least 20 percent caught in this predicament - thousands of people - do what the Izydorczaks did and carry their babies to term.

Kelly found out she was pregnant last October. It was a joyous moment for the couple, who had two boys and had been trying for a third child since 2000.

 

But 16 weeks into the pregnancy, a test showed that the fetus suffered from trisomy 18, leaving him with deformed feet, a cleft palate and a hole in his heart. The condition, which affects about 1 out of 3,000 live births, results from the presence of extra material in chromosome 18 that interferes with normal development. A more common type of trisomy is Down syndrome.

 

Their obstetrician presented the stark choice: Terminate or continue the pregnancy, but don't expect a medical miracle. After discussions with her husband and her pastor, Kelly chose to continue. "He looked so normal on the sonogram. He was moving around and looked perfect. How could I end his life?" she said.

 

The Izydorczaks also had invested so much emotion in the pregnancy, preparing for a newborn in the house and raising the expectations of their other sons, ages 9 and 12, who badly wanted a younger brother.

"Our hearts had been ripped out, but we told ourselves that we would hope for the best and that whatever happens will happen," Kelly said.

 

After making the decision, the couple started asking uncomfortable questions. Suddenly, a family that was supposed to be out buying a crib was thinking about a coffin instead.

 

What would they do if the baby lived for months and they had to decide about withdrawing life support? What would they say to people who asked about the pregnancy? What would they tell their other children? What would they do to remember this infant?

 

It was an awkward situation, mixed with terrible and happy moments. "I just put my game face on and didn't tell anyone. The thing is you get into these bittersweet situations where people are complimenting you about the pregnancy and you're hiding your true feelings," Kelly said.

 

Programs similar to the one at hospice offer comfort care for the neonate and counseling to families before and after a death. In cases where dying infants end up on life support, they may guide parents through the awful task of choosing the day their child dies. They also pick up where hospitals leave off, bringing services to the home.

 

The programs reflect a growing recognition that many families need support during pregnancy as they become attached to the prospect of having children and that some parents will treat their terminally ill newborns aggressively at home to prolong their lives.

 

Doing more to relieve the suffering of dying children and their families, regardless of how long a baby lives, remains a fairly new idea. There are only 51 perinatal hospice programs in North America, compared with thousands of hospice programs for adults. Yet, statistics suggest that the need is great.

 

About 25,000 stillbirths occur in the United States each year. An additional 28,000 newborns die before they turn 1. Congenital malformations and extreme prematurity are the leading causes of death. There are also hundreds of thousands of miscarriages.

 

"The neonatal population is growing, but palliative care for dying infants and children is decades behind," said Tricia L. Romesberg, a University of New Mexico Children's Hospital neonatal nurse who reviewed the state of perinatal hospice in a recent issue of the journal Neonatal Network.

 

Like others who find themselves feeling isolated in uncharted medical territory, Kelly started to do research.

"This hits a lot of people yet remains a hidden event. We don't even have a word for it like widow, widower or orphan," said William A. Zorn, who oversees palliative care at Women and Children's Hospital as director of family services in the neonatology department.

 

Zorn also directs the Western New York Perinatal Bereavement Network, a support group that conducts an annual walk to remember the brief lives of these infants. The Izydorczaks might have felt isolated, but they aren't. This year, more than 400 families showed up at the event.

 

"We're working toward the day when parents won't say there was no one around to help them," Zorn said.

Kelly Izydorczak's research led her to call hospice, which coincidentally had been planning to start a perinatal palliative program for babies with lethal conditions. The Izydor- czaks became the first clients.

 

The program put together a birthing plan and pulled together all the services the family needed. It also made sure doctors and nurses understood the family's medical wishes. For instance, the Izydorczaks didn't want fetal heart monitoring or a Caesarean section.

 

With guidance from Clem and her colleagues, the Izydorczaks told their sons about Devin's condition and prepared for the birth. They thought hard about creating mementos to help them remember Devin.

 

Kelly Izydorczak asked that the baby be placed in an outfit and blanket and that moldings be taken of his hands and feet. The family also wanted to save a lock of hair and take pictures with the other boys.

 

They stuck to the plan even after she went into labor 12 weeks prematurely and Devin was stillborn in April during a tough delivery. Everyone held the baby and spent the night with him in the hospital room.

 

For the Izydorczaks, it was a matter of bringing some significance to Devin's life.

 

"In the end, no matter what," Kelly said, "I wanted us together like a normal family."

 

Today, almost six months later, the Izydorczaks keep a scrapbook about Devin and express no regrets. They're still flabbergasted by the support they received from friends and family. A crush of people attended Devin's memorial Mass.

 

Kelly said, "I'm grateful we did what we did."     Buffalo News Article