Headlines
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
www.marchofdimes.com