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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

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