In the News

As published in The Hartford Courant, August 1, 2006.

TLC For Preemies' Parents

Support Programs Help Families Share Angst

By Hilary Waldman

FARMINGTON -- Looking back on the three months she spent watching virtually every rise and fall of her premature twins' matchstick ribs in the neonatal intensive care unit, what Jennifer McHugh remembers most vividly is the isolation.

McHugh's babies, Ryan and Julia, were born Feb. 4, 2004, 13 weeks ahead of schedule. Each weighed about 2 pounds.

Their mother remembers the nursery at St. Francis Hospital and Medical Center in Hartford lined with glass bassinettes, each occupied by a baby as small as hers and hovered over by parents who must have been as terrified as she was.

But nobody shared.

"Moms will look at each other," said McHugh, reflecting on those uncertain days. "But it's like a private pain you're going through."

In NICUs across the country, doctors and nurses work miracles on humankind's tiniest creatures each day. But their parents can feel forgotten.

"The nurses are absolutely wonderful, but their primary [focus] is the babies," said McHugh.

The March of Dimes is taking steps to change that with the introduction of family support programs in 39 hospital neonatal units across the country. The newest is at the University of Connecticut Health Center in Farmington.

UConn coordinator Jeanne Lattanzio said she hopes to ease the pressure on new parents while helping them feel more connected to their very small and fragile babies.

"We try to get them involved in the care, not just sitting outside watching what everybody else is doing to their babies," Lattanzio said.

To determine what families really need, Lattanzio is turning to the experts - NICU veterans such as McHugh and Christine Pellegrini, an East Windsor mother who also has premature twins.

The McHugh and Pellegrini babies were born just days apart and were in neighboring bassinettes at St. Francis. But the mothers never met until a nurse suggested they get together.

Now serving as parent volunteers at UConn's large neonatal intensive care unit, the women said they and their husbands would like to be available to new parents. "Andrew went home on a heart monitor, and it would have been nice to talk to a parent who felt that terror of hearing the alarm go off during the night," said Pellegrini, whose sons Andrew and Adrian were born Jan. 25, 2004, at 28 weeks' gestation.

Jennifer Beck and Steve Ferruci's daughter was born June 15, more than three months before her due date and weighing a bit more than 1 pound. Her parents now pass every day standing beside the tiny girl's bassinette, stroking her tissue-paper skin by placing their hands through arm-sized openings in her glass bassinette.

The baby came so early that Beck was still reading the pregnancy chapters of her "what-to-expect" books. The couple delivered before their first childbirth class. Beck and Ferruci said they cannot wait until the UConn program is up and running. Jennifer said she would love to have another mother to talk to.

"It would be so helpful and reassuring to know somebody survived this," said Beck, a teacher who lives in Thompson. "We don't know anybody who's had a baby this early."

Lattanzio said parent-support groups will certainly be part of the new program. She said her committee is considering other ideas:

Because the Beck-Ferrucis live more than an hour from the health center, they said they would appreciate a hotel-like room where they could stay close to the NICU.

Pellegrini said she would have liked to have a kitchenette near the St. Francis NICU, where she might have been able to make a cup of tea or heat a meal from home in the microwave. She might suggest such a kitchenette for UConn.

McHugh said she might suggest creating a playroom so families with children at home could bring them to the NICU. "Not for the hospital to be responsible for babysitting, but if the parents bring someone to care for the kids, there would be a place they could go," she said.

Lattanzio said the planning committee will begin introducing parent-support groups immediately.

While the March of Dimes mission is to prevent premature birth and birth defects, the family support program recognizes that babies continue to be born too early and too small, said Leigh-Anne Lefurge, a spokeswoman for the Connecticut chapter.

"While we're trying to prevent it," Lefurge said, "we can't forget it's happening in every state, and parents are in the NICU every day."