Reprinted with permission, Courtesy, Asbury Park Press, a Gannett Co. newspaper.
By CAROL GORGA WILLIAMS • COASTAL MONMOUTH BUREAU
April 1, 2010
LONG BRANCH, NJ --It was traumatic enough for parents Mark and Jackie DiStefano when their son Mason was born, premature, at 24 weeks, which experts say is at the edge of viability.
Each day, they visited Mason in his incubator at the Monmouth Medical Center neonatal intensive care unit, willing him the strength to get better, to get stronger.
|Mark and Jackie DiStefano with their nine-month-old son, Mason.
Photo: Mary Frank
Mason was struggling though, breathing with the help of a ventilator and feeding on breast milk from a drip tube. When medicine failed to heal a defective connection between two blood vessels that serviced his heart and lungs, the DiStefanos had to decide whether to authorize doctors to operate.
Mason weighed just 1 pound, 10 ounces last July when his parents gave the go-ahead. It had been a whirlwind three weeks since Jackie had shown up at Monmouth with what she and her physician hoped was a digestive disorder and turned out to be labor.
"I just couldn't imagine him being operated on," his mother said. "He was so tiny."
Transferring him to another hospital for the surgery would have severed the connection the Red Bank couple had established with their son's health care providers at Monmouth, and would have put Mason at risk. So they opted for a program in which specialists from the Children's Hospital of Philadelphia would come to Monmouth and perform the surgery at Mason's bedside.
"I felt he was so used to his environment and also for me, the nurses who took care of him at Monmouth would be there," said Jackie DiStefano. "They don't participate in the surgery but they were going to be there and they had been with him for the previous three weeks and obviously we could see him right before and right after. I just couldn't imagine him being transferred to another hospital and starting over again in a different environment. That would have been unbearable.
"Honestly, we would have done whatever was best for him medically," she said. "But the fact that he didn't have to be moved was so much better for us."
The surgery took about an hour under general anesthesia. His mother said Mason started feeling more like himself about 48 hours later.
"It didn't take long," she said. "I felt like this was one of the times in his care that was a turning point for him."
Dr. Susan Hudome, medical director of Monmouth's NICU, said one of the benefits of this particular procedure is the surgical team does not have to stay behind to manage postoperative issues. "This particular procedure lends itself well to a temporary team which can then leave the management in the hands of on-site staff with good success," she said.
Usually, Hudome said, the patients do very well. "It can improve how the lungs are working and make us progress meaning with the respirator and feeding," she said. "We see very few complications later with bleeding and infections and it helps us move their health care along in a positive way."
She estimated that about 30 percent of the premature babies born at Monmouth develop this condition, which means the team from Philadelphia, known as the Duct Busters, is here in Long Branch not quite once a month.
The Duct Busters are experts such as pediatric cardiothoracic surgeons, cardiothoracic anesthesiologists, nurse anesthetists and cardiac operating room nurses. Monmouth is just one of 18 hospitals with neonatal intensive care units that Children's Hospital — CHOP, for short — visits in New Jersey and Pennsylvania as part of the program.
"We wouldn't have the volume" to support such an in-house team at Monmouth, Hudome said.
Dr. Susan Nicholson, head of pediatric anesthesiology and the Duct Busters program, brings a team to repair the heart defect called patent ductus arteriosus. During pregnancy, the fetus's aorta and the pulmonary artery are connected by a blood vessel called the ductus arteriosus critical to providing blood flow to the baby.
Shortly after birth in a full-term pregnancy, the vessel is supposed to close as part of the normal changes occurring in the baby's circulatory system.
But sometimes in premature infants, the connection does not close, which forces oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery, straining the heart and the lungs.
If medication fails to close the opening — Mason's physicians tried it twice — surgery becomes the only option, experts say.
In the 1990s, there was a recognition that moving very tiny babies from one place to another was extraordinarily stressful on the struggling infants, so the Children's Hospital began doing what is often referred to as PDA at the infant's bedside.
The Duct Busters have performed this surgery 50 times at Monmouth Medical Center's Neonatal Intensive Care Unit since 2002, achieving perfect results each time, the hospital said.
When CHOP comes, all the participating hospital has to provide is the patient and the blood for the procedure. The Duct Busters bring everything else, packed up nice and neat in a black SUV.
"In addition to the safety of the baby, which is foremost, one of the things I learned over time is every NIC unit has a style and art of delivering care to these babies," Nicholson said. To break that up adds more stress to an already stressful situation, especially given that these babies can often be part of a twin or triplet set and splitting them up leaves one parent behind with the other babies while one parent accompanies the child getting the surgery.
"It is a very high-risk proposition to operate on a baby this small anywhere," Nicholson said. Keeping the family intact where the mother delivered is just one benefit of the program, she said.
CHOP visited Monmouth, which delivers more than 4,500 babies each year, more than any other program. It also comes to Jersey Shore University Medical Center where Robert Cavanaugh, public relations manager, called it "a great opportunity for the tiniest NICU patients at K. Hovnanian Children's Hospital . . . to receive on-site repairs for heart defects without being transferred to another hospital."
For Mason DiStefano, not quite 10 months old, his world is growing and so is he. His mother held him for the first time when he was 10 weeks old and he was released from Monmouth just before he reached 4 months.
Now, he weighs 14 1/2 pounds and developmentally, "he is doing great," his mom reports. "He is eating solid foods off the spoon, sitting up, rolling over. He laughs and smiles all the time."
His parents will remember his earliest days with a mixture of trauma and gratitude, Jackie DiStefano said.
"It was an ordeal that had a very happy ending," she said.
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