Premature babies conference source for families


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When a baby is born prematurely, two passionate forces converge within the neonatal intensive care unit -- the medical professionals who work decisively to keep the baby alive and prevent long-term health problems, and the parents who cleave to the child while trying to bend their minds around a reality that is very different from what they had planned for.

Melissa DeBernardi and her partner Kenya Smith of Plum speak with authority about that experience. Their son Kai Smith, who will be 3 years old on July 7, was born at 25 1/2 weeks gestation while they were on their way to Florida with Melissa's parents for a vacation.

Although she felt uncomfortably swollen during the car ride, Ms. DeBernardi, a first-time mother, did not realize she had developed severe preemclampsia.

Passing through Alabama, she stopped at a local hospital to check out her symptoms. With blood pressure of 210/180 and at high risk for a stroke, she was rushed by ambulance to a hospital in nearby Birmingham for an emergency delivery.

Newborn Kai weighed 1 pound, 9 ounces and was on a ventilator for nearly three weeks. Once he could be safely moved, he went by private jet to West Penn Hospital's NICU, where he remained for three months.

On Aug. 14, Ms. DeBernardi and Mr. Smith will share their experiences at a conference titled "Babies in the NICU" at the Western Pennsylvania School for Blind Children, Oakland.

Ms. DeBernardi, 37, will be part of a general panel on prematurity. Mr. Smith, 36, will speak on a fathers' panel.

The conference for parents, healthcare professionals and others interested in the issue of prematurity is organized by the Parent Resource Network, a local group that supports families with children born prematurely, with chronic illness or with congenital conditions. Philips Children's Medical Ventures is the primary sponsor.

The purpose of the conference -- the first statewide meeting on prematurity in several years -- is to provide a forum for discussion of the issues surrounding premature birth and to help families connect with resources.

Sessions will focus on research; the treatment of conditions associated with prematurity, such as respiratory synctial virus, speech delay and vision impairment; and family issues, such as breastfeeding the medically fragile child, accessing public funding sources, and early education.

   
Babies in the NICU
When: 7 a.m. to 5 p.m. Aug. 14.

Where: Western Pennsylvania School for Blind Children, 201 N. Bellefield Ave., Oakland.

To register: Call 877-647-4373 or visit www.parentresourcenetwork.org. Parent scholarships are available. "Preemie for a Day," an interactive, multi-sensory training that contrasts the experience of an infant in a traditional NICU environment with a developmentally supportive one, will be available to the first 150 registrants.

  

According to the 2009 March of Dimes Pre-Term Birth Report Card, Pennsylvania earned a "D" rating in preventing prematurity, but not many states do better.

Only one, Vermont, earned a "B" rating and none earned an "A" on such criteria as reducing the number of women of childbearing age who smoke (Pennsylvania's level is 24.7 percent), reducing the number of uninsured woman of childbearing age (12.1 percent statewide) and lowering the rate of late-pre-term birth (8.2 percent statewide).

Dr. Robert Cicco, a specialist in pediatric, neonatal and perinatal medicine at West Penn Hospital, said that Pennsylvania has done a good job making sure that children have free or affordable medical insurance, but similar coverage should also be extended to pregnant women.

On the issue of tobacco use, Pennsylvania is more significantly behind. "The political will to do what is needed is not there," Dr. Cicco said, adding that he hopes the government officials, policy makers and insurers who have been invited to the conference will gain a fuller understanding of prematurity as a serious public health problem and reach consensus on reducing its incidence.

The increasing rate of late-term prematurity -- between 34 and 37 weeks' gestation -- is a particular issue, he said.

"When a baby is born early, no place takes better care than the U.S. The problem is that we have way too many. We have great technological care, but the outcome is better if they get further along in the pregnancy."

Dr. Cicco said the conference also highlights another long-time interest -- family-centered care. "When these babies go home, many have a hard time. When we help the parents become more competent, it has a dramatic effect."

Ms. DeBernardi said she was pleased with the care her family received in the West Penn NICU and later at Transitional Infant Care Hospital.

She also praised the support provided by Kelly Fraasch, founder/president of Parent Resource Network and the mother of two children born prematurely. Ms. Fraasch, she said, helped her "get through the darkest moments" of guilt, grief and other emotions that many parents of premature infants have. Ms. DeBernardi has now become a parent mentor for the network.

As Kai approaches his third birthday, he has reached the robust 95th percentile in weight and height. He deals with several health problems, including mild cerebral palsy, retinopathy of prematurity and asthma, and receives therapies through state-funded early intervention and private providers.

"But he's here with us, and that's more than we thought," said Ms. DeBernardi.

"I have a son to hold onto, squeeze and love," she said. "He fought, and he fights now. It's what kept him alive."


Tina Calabro: tina.calabro@verizon.net .


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