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Change and Perspective

by Cynthia Bissell, R.N.familyfocus

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 at 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 them, it was difficult to see our babies among all the tubes and wires. They looked like tiny albino monkeys, covered with fine blond hair.

A roller coaster ride

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 circulating to the rest of the body), hyperbilirubinemia (jaundice), and anemia.

Eric’s most serious problem was bilateral periventricular leukomalasia (PVL), a brain injury in which tissue around the ventricles (chambers in which cerebrospinal fluid is made and circulated) is damaged due to insufficient blood flow or lack of oxygen. Eric has spastic quadriplegic cerebral palsy as a result of his PVL. 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 complication 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. Aaron has more recently been diagnosed with asthma, attention deficit hyperactivity disorder (ADHD), and learning disabilities.

An amazing journey

The twins are now 9 years old and the trauma of the NICU has gradually faded. We are amazed at where the twins have taken our family over the past nine years. When the boys first came home from the hospital, I was often housebound caring for two sick, fragile infants. I turned to the Internet for information and support. My computer became my link to the outside world. I began building web pages as a way to network with other families and share our experiences. Since my husband Richard and I are both RNs, we had a bit of an advantage caring for sick babies. One of my web pages, Aaron’s Tracheostomy Page (www.tracheostomy.com) has become the leading tracheostomy resource on the Internet. I have also published a Pediatric Tracheostomy Home Care Guide, which is currently in its second edition. Networking with other parents around the world who are dealing with similar issues as our family was extremely therapeutic, and it not only helped us to work through our past experiences, it also is helping us face the many challenges ahead.

The twins hectic schedules of therapies, doctors’ appointments, and surgeries made it difficult to work a regular job. I have gradually moved away from nursing and now build Internet resources. This enables me to work at home with a more flexible schedule.

Benefits of networking

Once the boys’ health began to stabilize, Richard and I were able to begin networking in our own community. We attended our first Family Leadership Series in 1997. The Leadership Series is sponsored by Families Organizing for Change (FOC). FOC is a statewide, grassroots coalition of families with children and adults who have disabilities or chronic illness. The Leadership Series is a six-day series, which teaches families about leadership and advocacy. Richard served as FOC Regional Coordinator for two years and is now an employee of the State of Massachusetts, working with individuals who have developmental disabilities.

Through networking with other families, we found our third son, 9-year-old Anthony. Anthony has severe cerebral palsy and was at risk of institutionalization. We were so happy to be able to adopt him and avoid that outcome.

A matter of perspective

Richard and I are often asked how we manage, having three children with special needs. Well, we have learned that “problems” are all a matter of perspective. We discovered this back in the NICU when we were told that Eric had PVL and Aaron would need a tracheostomy. We were paralyzed with worry and fear, but gained some insight on our 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 of us were grieving from different perspectives. We realized that although things could be better, they could also be much worse.

In less than a decade, our children have completely changed our lives. We have changed careers, met new friends, and become advocates for people with disabilities. We have also developed different philosophies and new perspectives. The boys have taught us about strength, endurance, patience, and what is truly important in life.

Copyright © 2002, Cynthia Bissell. Used with permission. To learn more about the Bissells, visit their web site at www.bissells.com.

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