As reported by the Journal Inquirer, September 18, 2006.

Help for Families of Premature Babies

By Kory Loucks

Amanda McTighe of Ellington had a tenuous beginning: She was born five months prematurely, weighing just over a pound.

Today she is a healthy, happy 5-year-old entering kindergarten. "She is smart as a whip," says her father, John McTighe, a March of Dimes ambassador.

In June the March of Dimes chose the University of Connecticut Health Center as the first hospital in Connecticut to be part of the March of Dimes Neonatal Intensive Care Unit Family Support project.

Currently there are 39 NICU programs across the United States. The goal is to have the Family Support program in all 50 states by the end of 2007, according to Leigh-Anne Lefurge, communications director for the Connecticut Chapter of the March of Dimes.

Helping families is at the heart of this initiative. "The support is not just for the parents, but the extended family as well," Lefurge says.

"It is overwhelming in every sense of the word" for the parents and families when a baby is born prematurely, she says. "Anything that we can do to make the parents' experience less overwhelming we are thrilled to do," she adds.

For John McTighe and his wife, Kimberly, it was "touch-and-go" in the beginning. Amanda spent a total of 138 days, almost five months, in the hospital. McTighe says.

"We had a really rough time early on," he says. Because they live in Ellington it was logistically challenging to drive to Farmington each day to see their baby.

While the medical community has made great strides in dealing with the physical problems of premature babies, the affect on families had been overlooked until now, McTighe says.

When he and his wife went through their ordeal, "We felt completely alone," he adds.  It wasn't until much later that they learned that in fact one in eight babies are born prematurely.   "It is a silent epidemic," McTighe says.

UConn Medical Center is a "transport" hospital, which means families that live as far away as an hour and a half may have their babies here because of UConn's ability to care for the smallest of the newborns. The hospital has 48 beds for prematurely born babies.

The McTighes were able to secure accommodations close to the medical center through a relative, but it underscores a serious issue for other parents who may live even further away from the facility. "What do parents do?" asks McTighe.

Because of this distance issue, one of the projects the committee members have been working on is to secure reduced rates at area hotels for the parents.

Through their efforts three local hotels, Homewood Suites, the Farmington Inn, and the Farmington Marriott, have offered to deeply discount rooms for parents who have to travel long distances to the hospital to see their newborn, McTighe says.

In addition, the committee is also working on other projects, such as transforming the waiting area into a more "kid-friendly" space for the children who come to the hospital with their parents.

The committee is also working on a program to aid with transportation for those who don't have cars and cannot afford to take the bus every day to the hospital, such as providing bus passes, according to McTighe.

Other ideas the committee is investigating include developing a program to send updated progress report digital photographs online to family members who may not live locally, or even to a recovering mother who may be in another hospital and unable to get to the heath center.

The March of Dimes is in the process of printing foreign language pamphlets for those for whom English is not their native language, says McTighe.

McTighe decided that he wanted to give back to the hospital and help other parents so he became a March of Dimes ambassador, volunteering his time on a committee that meets monthly to help implement changes.
Asked why he volunteers, considering he already has an extremely busy life with two young children at home, McTighe says, "We made it through and we just feel we owe something back."

The March of Dimes has hired registered nurse Jeanne Lattanzio of East Hartford as the family support specialist. The March of Dimes is fully funding the salary of each family support coordinator.

Lattanzio retired in 2004 after 35 years at UConn Health Center, much of her career working in administration, but decided to return because she "wanted to do more for families."

As the grandmother of an 8-year-old boy who started his life in the Neonatal Intensive Care Unit, Lattanzio has a personal understanding of the families' experience.

"We are very excited to have the March of Dimes here. It has been wonderful to have the resources available. We are trying to make it the best experience possible for the parents," Lattanzio says.

Dr. Wale Folaranmi, the attending physician on the NICU unit, says the program "centers around a good integration of medicine and family. I think it is a great program."

Jennifer Beck of Thompson travels an hour each way every day to see her baby in NICU. Her baby was born 26 weeks prematurely, on June 15, weighing 1 pound, 12 ounces, and was immediately brought to UConn Health Center from William W. Backus Hospital in Norwich.

Today her baby weighs 4 pounds, 8 ounces, and will most likely be able to leave the hospital close to her original due date of Sept. 21, according to Beck.  The baby is "alert - she smiles and stays awake," says Beck. "Jeanne has been wonderful - very supportive," she adds.

Today is a particularly happy day because Beck has an appointment in the afternoon to interview a pediatrician for her baby.  "We are trying to make this be the best experience possible for the parents," Lattanzio says. "It is so important what we are doing now. It is wonderful to be with the patients and the families. I love it."

And the circle of giving continues. "Someday we will be one of these parents who give back. I would love to do that," Beck says.

For more information contact the March of Dimes at 860-812-0080 or UConn Health Center at 860-679-4523, or visit the Web sites at: http://neonatal.uchc.edu