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The Special Care Nursery: Uncertain Beginnings to Bright Futures - 11/01/2006

By Nancy Martin

For the first week of his twin sons’ lives, Bob Cugno tried to fight his fatherly instincts.

“I was in self-protection mode,” he says. “I didn’t want to get attached to the boys because I was afraid we’d lose one or both of them.”

His wife, Beth, watched other new moms leave the hospital, warm bundles in their arms. Their boys remained in the Hospital’s Special Care Nursery, their lives dependent on tubes, machines, and the constant vigilance of physicians and nurses.
Kyle and Cory Cugno were born 10 weeks premature, after a fairly uneventful pregnancy. Like many “preemies,” Kyle’s lungs weren’t fully functioning. He also had an intestinal infection. Cory was breathing a little better, but required oxygen.
Birth is generally a joyful experience, even if laced with a little anxiety. But for parents whose babies end up in neonatal intensive care, fear, stress, and exhaustion can overshadow the joy.

“Most people don’t think their baby will need intensive care,” says Scott Weiner, MD, a board-certified neonatologist in The Hospital of Central Connecticut’s Special Care Nursery. “It’s very difficult for these parents when mom goes home and the baby has to stay.”

“Every morning, we’d call the nursery to see how the boys got through the night,” says Beth Cugno, of Kensington. “Our hearts were pounding as the phone rang. There were so many unknowns.”

The two most common reasons babies need intensive care are breathing problems – often due to immature lungs – and infections that can prompt premature birth, says Antoinetta Capriglione, MD, chief of pediatrics and director of the nurseries at The Hospital of Central Connecticut. Other factors that can lead to prematurity include pre-existing maternal diabetes, vascular or other diseases. The age of the mother can also be a big factor.

A full-term pregnancy is 40 weeks, give or take two weeks. The Hospital of Central Connecticut’s Special Care Nursery, part of the Ferdinand Sauer, MD Family BirthPlace, can accommodate babies as young as 29 weeks. The Nursery can provide ventilator support and other treatments for premature babies, as well as for full-term newborns requiring extra care.

“It’s reassuring to parents and obstetricians to have state-of-the- art intensive care right here,” says John W. Andreoli Jr., MD, associate chief of obstetrics and gynecology. “The neonatologists’ expertise and advances in technology have certainly improved outcomes for these babies.”

While the vast majority of babies requiring intensive care are treated in the hospital’s Special Care Nursery, babies younger than 29 weeks usually need to be transferred to a “Level 3” neonatal intensive care unit. “We are a Level 2 nursery, which means we can take care of all but the very sickest babies. We are very good at caring for babies with unexpected, temporary setbacks,” says Dr. Capriglione, a board-certified neonatologist, who has been in practice at the hospital 26 years. “We help parents understand that their baby is having difficulties, but will be fine.”

Crucial first hours
When babies are very sick, the treatments they receive immediately after birth are critical. In the few cases where newborns require specialized treatment elsewhere, the team at the hospital ensures they get everything they need until they are transferred.

“So much about these babies’ survival depends on how you stabilize them in the first 12 to 24 hours,” Dr. Capriglione says.

A routine metabolic screen at the Sauer Family BirthPlace revealed that Kyle Cugno has a rare, potentially fatal genetic disorder — Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD). Most people can convert fat to energy when they run out of carbohydrates. MCADD sufferers lack an enzyme required to convert fat, so they have to eat frequently – in Kyle’s case, every four hours. “That test saved his life,” Bob Cugno says.

Kyle spent four weeks in the Special Care Nursery, and another four at Connecticut Children’s Medical Center in Hartford for emergency exploratory surgery for his intestinal infection. Cory stayed at HCC for seven weeks.

A newborn’s stay in a neonatal ICU can range from a few hours to months, depending on the baby’s condition. Born two months premature at 32 weeks, twins Nikolas and Nina Bodnar initially required antibiotics and breathing assistance. Nina quickly progressed and was released from the nursery after three weeks. But Nikolas suffered many of the ups and downs common to premature babies and remained in the unit for five weeks before going home with an apnea monitor (which sounds an alarm if the baby stops breathing during sleep).

“It was very difficult,” says mother Kim Bodnar. “I’d leave at the end of the day not knowing what I’d return to find the next morning. I knew Nina would be the same, but Nikolas’ condition often changed quickly.”

When Maria Galeota, now 15, was a newborn, she spent just five hours in the Special Care Nursery before transferring to Children’s Hospital Boston. Things appeared to be fine when Ann Galeota went into labor at 42 weeks. But during labor, Maria inhaled meconium (the baby’s first feces inside the womb) and went into distress. Severe meconium aspiration can partially or completely block the baby’s airways, causing severe illness or death.

“It was very scary,” says Ann, who is herself a registered nurse. “Dr. Capriglione came to me a couple times and said, ‘She’s not doing well, but she’s fighting.’”

Ann and her husband, Tom, were faced with a difficult choice: risk having their daughter on a respirator for life or send Maria to Boston for a (then) new treatment that pumps the baby’s blood through an artificial lung to add oxygen and remove carbon dioxide, then returns the blood to the baby. They opted for the new treatment. “It was risky, but I knew we could have a normal child if it worked,” Ann says.

Challenging first weeks
Bodnar traveled from Barkhamsted every day to spend 12 to16 hours holding and feeding her twins in the Special Care Nursery’s transition rooms, designed to accommodate the babies’ equipment and family members’ needs.

With their babies hospitalized for extended periods and hooked to oxygen, feeding tubes, IV lines and other equipment, parents — and ICU staff — make special efforts to encourage bonding.
“As soon as the baby is stable enough to go into the parents’ arms, we want him or her there,” Dr. Weiner says.
Nursery staff encouraged Kim and husband, Bohdan, to practice “kangaroo care” – holding the twins, skin-to- skin, against their parents’ bare chests.“That made such a difference,” Kim says. “I encourage all new parents to take advantage of these opportunities.”

Now with healthy six-month-olds, she is grateful for the excellent care and advice she received at The Hospital of Central Connecticut, and offers some of her own advice to parents with newborns in the ICU: “Ask lots of questions. Take care of yourself – get as much rest as you can.” And, she adds, “Take it one day at a time.”

Bright futures
“The best moment for me is putting a baby in the arms of a mother who might not have been able to hold her baby previously,” says Carolyn Rossi, RN, clinical manager of the Family BirthPlace nurseries.

Fifteen years after her daughter’s harrowing first weeks, Ann Galeota looks fondly at a picture of herself holding Maria for the first time. It’s hard to imagine the fragile baby in the photo grew into the teenager who plays tennis and soccer and works hard to excel at Bolton High School. “She has an incredible drive to do better,” Galeota says. “It’s the same drive that kept her going as an infant.”

Kyle and Cory Cugno are typical 2-year-olds – climbing, exploring, and picking up anything that grabs their attention. Kyle’s MCADD will require a lifelong low-fat diet, but he’ll be fine otherwise, the Cugnos say.

“We went through a very frightening experience,” Bob says. “We called it ‘the nightmare we couldn’t wake up from.’ But the staff at the Special Care Nursery helped us through it, and we got a lot of support from our family, friends and our church. It was tough, but our story has a happy ending.”

Sidebar:
New Ways to Treat Newborns
The Hospital of Central Connecticut’s Special Care Nursery was one of the first in Connecticut, founded over 30 years ago. It is housed in the Ferdinand Sauer, MD Family BirthPlace, which provides comprehensive pregnancy, labor and delivery and nursery services.

The Special Care Nursery can accommodate 14 newborns and is staffed by three board-certified neonatologists — physicians specializing in newborn intensive care — and nurses trained and certified in neonatology. Anesthesiologists and other physician specialists, pharmacists, nutritionists, a social worker, and other professionals provide care and support as needed.
Many treatment advances implemented throughout the Family BirthPlace are especially significant for Special Care Nursery babies, who have longer stays and more procedures. These advances include:

- Neopuff™ Infant Resuscitator — Allows the neonatology staff to set the precise pressure to keep newborns’ lungs optimally expanded. Neopuff is used right in the delivery room. The result: “Some babies with breathing difficulties don’t have to go to the Special Care Nursery at all; others stay just a day or two, versus a longer stay,” says Antoinetta Capriglione, MD, chief of pediatrics and director of the nurseries at the hospital.

- Pain management — Babies receive local anesthesia before circumcision, blood draws, insertion of intravenous lines, and other procedures.

- Environment — Lighting that mimics day and night; quiet equipment; and an acoustically-sensitive nurses’ station create a more natural, relaxed environment.

- “Clustered” care — Staff try to perform all tests or procedures at a time that minimizes disruption and stress for the newborn.