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preemies

UMass Memorial Neonatal unit turns 40

Telegram & Gazette Sept 14, 2014

Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit's 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)
Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit’s 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)

By Michael Gelbwasser CORRESPONDENT

WORCESTER — Aaron Bissell spent his infancy fighting for survival in the UMass Memorial Neonatal Intensive Care Unit. Now, 21 years later, “I’m well. I’m doing a lot of writing. And I take singing lessons. I pretty much do a lot of creative stuff,” said Mr. Bissell, of Grafton.

The neonatal intensive care unit’s 40th birthday was celebrated Saturday at the UMass Memorial Medical Center — University Campus, 55 Lake Ave. North. Numerous former patients of all ages gathered for a group photo on the front lawn.

The festivities celebrated “all the families that were able to have their children come home with them,” to remember the children “that left this world, frankly, too soon,” and to thank the families for letting the doctors and nurses “care for their children,” said Dr. Alan Picarillo, the UMass Memorial Medical Center’s chief of neonatology.

“It was a total privilege of caring for these children,” he said. “These families would leave them with us for long periods of time.”

The unit has cared for more than 20,000 infants since opening in 1974 with six beds, hospital officials said. The program now has 49 beds. Aaron Bissell and his twin brother Eric, born at 26 weeks, were treated “at the old NICU, over at Memorial Hospital,” in 1993, according to their mother, Cynthia.

“I can tell you, the first couple of years, both of the boys were very medically fragile. It was totally scary,” she said. “I’m a nurse, so I knew the risks involved in twins being born 3 1/2 months too soon.”

“I really came here today to thank some of the doctors. I remember all of them,” Mrs. Bissell added.

Dr. Picarillo said “the caring of the front-line staff” has been the one constant during the unit’s 40-year history.

“The amount of time they spend with the families, comforting them, encouraging them, empowering them. That’s what hasn’t changed,” he said.

Dr. Picarillo noted that infants brought to the unit are living longer than ever.

“In 1974, typically under 28 weeks wouldn’t survive at all. Now, we routinely save babies with 23 weeks,” he said.

Triplets Jameson, Payton and Callie Kaska of Northbridge are now 3 years old, said their mother, Lindsay. Their earliest days were “an emotional roller-coaster ride, living day to day,” Mrs. Kaska said. Now, the kids “are amazing. They’re right on target. They’re healthy,” she said.

Many families and staff reconnected on Saturday. Nurse Christina Evans was especially proud of Edward Parker Gagne, 4, of Holden.

“This little guy was one of my first babies I cared for,” said Ms. Evans, who has worked in the unit for 14 years. “To see him where he is today brings tears to my eyes.”

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California Octuplets

(CNN) — A woman in California delivered what may be the nation’s second live-born set of octuplets on Monday morning, surprising doctors who expected seven babies.

“The hospital said the woman didn’t want her personal information released to the news media, and it would not answer questions about whether she’d had fertility treatments.”

Stupid question, did she have fertility treatments? How else could she have a litter of kids? Crazy!

A Matter of Perspective

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Readers Talk About: Twins

Aaron and Eric Bissell are identical twins whose very different disabilities stem from medical complications associated with their premature birth.  Aaron (left) has bronchopulmonary dysplasia and a tracheostomy; he is now oxygen-dependent only while sleeping.  Eric (right) has spastic quadriplegia cerebral palsy.
Aaron and Eric Bissell are identical twins whose very different disabilities stem from medical complications associated with their premature birth. Aaron (left) has bronchopulmonary dysplasia and a tracheostomy; he is now oxygen-dependent only while sleeping. Eric (right) has spastic quadriplegia cerebral palsy.

Seventeen weeks into my pregnancy, an ultrasound revealed that our first “child” would be twins! Our excitement and anticipation were short-lived, however. Eric and Aaron were born a 26 weeks gestation–three and a half months too soon.

Our lives as parents certainly got off to a rough start, as did the lives of our boys, who were immediately whisked off to the neonatal intensive care unit (NICU). When we finally got to visit, it was difficult to see our babies among all the tubes and wires. They looked like little albino monkeys, covered with fine blond hair.

The boys spent the next three months in the NICU, a stressful roller coaster ride that can be truly understood only by other parents of “preemies.” Both boys had many of the problems common to prematurity, including hypotension (abnormally low blood pressure), respiratory distress syndrome, intracranial hemorrhages (bleeding in or around the brain), retinopathy of prematurity (an eye disorder), patent ductus arteriosus (a condition in which oxygenated blood flows back into the lungs rather than circulation to the rest of the body), hyperbilirubinemia (jaundice) and anemia.

Eric’s most serious problem was bilateral periventricular leukomalasia (PVL), a condition in which tissue around the brain’s ventricles (cambers in which cerebrospinal fluid is made and circulated) is damaged due to insufficient blood flow or lack of oxygen. Aaron needed a tracheostomy because of acquired subglottic stenosis (a narrowing of the area beneath the vocal cords and the opening between them), an unfortunate result of his earlier need for a breathing tube. Because of damage to his lungs and airways, he also had bronchopulmonary dysplasia, a chronic condition that would always affect his breathing.

The twins’ first year was pretty much a blur. Aaron, who was oxygen-dependent, needed 24-hour-a-day nursing care; Eric was a colicky, fussy baby who rarely slept. We knew Eric had PVL and would probably have a disability but had no idea how mild or severe it might be. Not knowing was the hardest thing to deal with; once he was actually diagnosed with spastic quadriplegia cerebral palsy, we could finally begin to cope.

Although Aaron’s problems are more acute now, his long-term prognosis is good; Aaron’s problems can be “fixed.” We no longer notice his tracheostomy; even to Aaron, it’s just a part of who he is–eyes, ears, nose, bellybutton, trach. At the same time, Aaron’s more average motor skills are a constant reminder of what Eric might have been. They would be so cute running around the house together.

Despite their differences, the boys share a close bond. It is common for twins to develop their own private “language,” but because of Aaron’s tracheostomy and Eric’s severe speech delays, our twins communicate through an unusual “quacking” noise. Sometimes it sounds like we have ducks in the living room.

In many ways, Eric and Aaron are typical toddlers–each wants what the other possesses. Unfortunately, Aaron has an unfair advantage. As for Eric, I often joke that he never does anything wrong because of my excellent parenting skills, but I wish he could get into trouble sometimes. I don’t see myself as a strict disciplinarian, but I have no doubt that I am more lenient than I would have been if the boys had no problems. A friend watches nervously as Aaron stands on a dining room chair and asks, “Why do you let him do that?” Glancing at Eric lying on the floor like a turtle on its back, I answer, “Because he can.”

Richard and I are often asked how we manage. Well, “problems” are all a matter of perspective. I discovered this back in the NICU when we were told that Eric had PVL and Aaron would need a tracheostomy. I was paralyzed with worry and fear but gained some insight on my own situation by observing two other mothers. One woman was upset because one of her twins was temporarily under an oxygen hood; the other was despondent because one of her twins had died. All three of us were grieving from different perspectives. I realized that although things could be better, they could also be much worse.

–Cynthia Bissell
Grafton, Massachusetts