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Periventricular Leukomalacia (PVL)

By Cynthia Bissell

Happy and healthy two-year-old Eric (a  former 26-weeker) with PVL and cerebral palsy loves to meet people.
Happy and healthy two-year-old Eric (a former 26-weeker) with PVL and cerebral palsy loves to meet people.

Periventricular leukomalacia . . . even in my nursing career, I had never heard of this diagnosis. I only knew it didn’t sound good. When I asked Eric’s neonatologist what this meant, he answered simply, “Cerebral palsy.”

Eric and his identical twin brother, Aaron, were born on July 28, 1993, at 26 weeks gestation. Both had many of the common complications of prematurity. Eric’s most serious complication was and is periventricular leukomalacia, or PVL.

When I first learned of Eric’s condition, I attempted to find out everything there was to know about the subject. I wanted an exact portrait of how this diagnosis would affect my son. I quickly learned a lesson that all families raising a child with a disability learn—there are no clearly defined borders in relation to outcome. We only knew that Eric was at high risk for cerebral palsy.

But what did that mean? Would he walk with a limp? Would he be severely disabled? My spirit grieved for Eric and my mind created negative caricatures of Eric’s future. Not knowing exactly what I was grieving for made it all the worse. Seeing a person in a wheelchair affirmed my worst fears. Seeing a typical child running and playing outside gave me a glimpse of what Eric had lost. As I looked upon this beautiful, tiny baby it seemed impossible that his brain was not perfect. I cried for what Eric had lost at such a young age. I also wept for the loss of Eric as I had imagined he would be. In many ways, the unknown was the hardest part of Eric’s diagnosis of PVL.

Children come into this world innocent, carefree, and full of life. At least that is how it’s supposed to be. What possibly could have gone so wrong that my child would never have the same advantages as typical children? Questions such as this constantly went through my mind. I struggled with feelings of guilt, sadness, anger, and jealousy. Guilt for maybe having done something that caused the twins to be born too soon. Sadness at the loss of the usual joys of pregnancy, childbirth, and twins. Anger because this happened to our family and jealousy toward people with “normal” children.

Now that Eric has actually been diagnosed with cerebral palsy, I am slowly gaining insights into his full potential. At least I can begin to cope. I try not to mourn what was lost, but accept and acknowledge what has been found. I realize that although things could have turned out better, they could also be much worse.

I am thankful for Eric and his brother. Eric has an infectious smile and a belly laugh that is contagious. He has brought tremendous joy into our lives and into the lives around him. He has taught me patience and to take nothing for granted. He has taught me what is truly important in life. When I first learned of his diagnosis, all I could think about was his disability. Now I see that he is “Eric,” a child similar in most ways to any other child. His disability is only a small part of who he is.



Your Premature Baby and Child," Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.
Your Premature Baby and Child,” Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.

When Your Preemie Needs a Tracheostomy

by Richard and Cynthia Bissell

Fifteen-month-old Aaron (a former 26-weeker) doesn't let his trach get in the way of his exploring and learning
Fifteen-month-old Aaron (a former 26-weeker) doesn’t let his trach get in the way of his exploring and learning

We will never forget the day we went into the hospital and found Aaron in respiratory distress. His little eyes were open wide with fear. As he gasped for breath he seemed to plead with us for help. We felt so helpless as we watched him struggle to breathe. We could hear a tiny squeak coming from him with every breath he took. He was immediately intubated.

It was difficult to remain calm as we listened to the rhythmic sounds of the ventilator breathing for Aaron at the same time the neonatologist talked. Aaron had subglottic stenosis (a narrowing of his airway). The doctor recommended a tracheostomy. The implications of this were enormous. We could not believe they were going to cut our baby’s throat. He was so tiny—only four pounds—and so fragile. We felt like we had been punched in the stomach.

Making a decision like this would be difficult under normal circumstances, but we were making it after weeks of little sleep and constant worry. We were forced to depend on the competence and integrity of the medical team. We were putting the life of our tiny precious son in the hands of strangers.

The most difficult part was kissing Aaron good-bye before sending him into the operating room. Part of us wanted to stop the whole thing and just hold him and tell him everything would be all right. Our more rational side handed him to the surgeon and watched tearfully as he was escorted down the hall.

Seeing Aaron for the first time after his surgery brought both relief and trepidation. He looked so much more comfortable: He was not struggling to breathe and he was peaceful. Yet, he had this foreign tube sticking from his throat and many tubes attached to his small body. We wondered, What would be the final outcome? Would he be able to talk? What would our lives be like as we cared for this child? Many of these questions could not be readily answered.

The day before Aaron came home from the hospital, the medical supply company delivered all the equipment we would need to care for him at home. Before we knew it, our living room was full of medical stuff—a suction machine, monitors, oxygen tanks, tubes, and wires. It was all a bit overwhelming.

Once Aaron was home, one of the scariest jobs was our first trach tube change without the backup of the hospital personnel. We were also afraid that his trach tube would become blocked or that a curious child (even Aaron himself) would pull out the tube.

Over time, trach care has become so routine that we often don’t think twice about it. To Aaron, the tracheostomy is just another part of him, like his eyes, ears, nose, and belly button. We try to treat Aaron as a typical kid, but with a few added precautions.



Your Premature Baby and Child," Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.
Your Premature Baby and Child,” Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.

Families Organizing for Change


Diane Enochs, Area Director, Central Region DMR, Congressman Jim McGovern, Rich Bissell, Regional coordinator, Families Organizing for Change.
Diane Enochs, Area Director, Central Region DMR, Congressman Jim McGovern, Rich Bissell, Regional coordinator, Families Organizing for Change.

“Congressman McGovern has been a long time advocate of individuals with disabilities and their families, this forum is just another way for him to get out and meet the people he is representing.” This is how Rich Bissell, Regional Coordinator for Families Organizing for Change sums up the recent community forum that McGovern attended in Shrewsbury. After visiting with two Central Mass families in their homes, McGovern met with over 100 individuals with disabilities and their families.

Representatives from the Department of Mental Retardation, Matson Community Services, and the Seven Hills Foundation were also in attendance. McGovern spoke on issues of health care, education and social security before taking a series of questions from those in attendance. The local advocacy group “Central Massachusetts Families Organizing for Change” of which Bissell, a Grafton resident heads, coordinated the event. According to Bissell Families Organizing for Change is “a group of families and self advocates that have come together for mutual family support and advocacy in order to make life better for all individuals with disabilities.” Supported mainly by The Department of Mental Retardation, Families Organizing for Change provides advocacy training for families who care for a person with a disability. “Diane Enochs, (the DMR Area Director for the Central Region), has been tremendously supportive of FOC,” Bissell says, “ Without her support we would face a real uphill battle.” McGovern spoke about how “Government and Community must work together to ensure that individuals with disabilities are given opportunity and a chance to succeed.” He also spoke about “utilizing existing resources in creative and more effective ways.” “DMR seems to be taking a front seat when it comes to reaching out to the community. Supporting organizations such as FOC and Self Advocates Standing Strong (a Statewide group of individuals with disabilities) puts decision making power in the hands of the consumer, where it really belongs.” Stated Cindy Bissell, Mother of twin boys with disabilities and wife of Richard.

Issues raised at the forum included transportation problems for people who cannot drive, lack of resources at the public school, and financial difficulties faced by families who have children with disabilities. “The message that I wanted the Congressman to hear is that Families want choices. Bissell said, we are like all parents, we want to be able to keep our children safe, at home with us, and we want to be able to give them the tools that they will need to succeed in life. My sons need extra support now and they might even require a certain level of support their entire lives. They deserve the same opportunities as every other child. Eric is in a wheelchair and will need that wheelchair for his entire life. But that wheelchair is only a small part of who he is and does not totally define him. If he is given adequate support now, when he is young, there is a good chance that he will need much less support later in life, and more than that, there is a good chance that he will have a lot more opportunities for success.”

Congressman James McGovern
Congressman James McGovern

A Matter of Perspective

rehabA Matter of Perspective

by Cynthia Bissell

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…

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.

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 condition in which tissue around the brain’s 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 brain injury. 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. Aaron has more recently been diagnosed with asthma and attention deficit hyperactivity disorder (ADHD).

The Bissell Family: (left to right) Aaron, Cindy, Eric and Rich
The Bissell Family: (left to right) Aaron, Cindy, Eric and Rich

The twins are now 5 years old and the trauma of the NICU has gradually faded. It is amazing to me where the twins have taken our family over the past 5 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) has become the leading tracheostomy resource on the Internet. 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. Our home page is at

The twins hectic schedules of therapies, doctors’ appointments and surgeries made it difficult to work a regular job. In December of 1996, I got an opportunity to work on an experimental grant project that has afforded me a more flexible schedule. The Family Health Support Project is a Department of Mental Retardation (DMR) / University of Massachusetts collaborative project in which family members and self-advocates have been hired as part of the medical team. I currently work in pediatric neurology at University of Massachusetts Memorial Health Care, were I help families advocate for their child with special needs and at the same time, help the medical teams understand the needs of families and foster family-centered care.

Once the boys’ health issues 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 and/or chronic illness. The Leadership Series is a six-day series, which teaches families about leadership and advocacy. Now, two years later, Richard is the Regional Coordinator for Central Massachusetts FOC.

We Have learned that “problems” are all a matter of perspective.

In just 5 short years, the twins have completely changed our lives. We have changed careers, met new friends and we have become advocates for people with disabilities. We have also developed different philosophies and new perspectives. The twins have taught us about strength, endurance, patience, and about what is truly important in life.

Richard and I are often asked how we manage, having two 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 ‘Dougie’s Corner’

The MetroWest Daily News
Monday April 12, 1999

Doug Flutie Jr., 7, sits with his grandmother, Agnes Fortier in "Dougie’s Corner," as Doug Flutie signs an autograph for a fan, following the dedication ceremony of the new autism resource center at Natick’s Morse Institute Library yesterday. Photo by Judy Royster
Doug Flutie Jr., 7, sits with his grandmother, Agnes Fortier in “Dougie’s Corner,” as Doug Flutie signs an autograph for a fan, following the dedication ceremony of the new autism resource center at Natick’s Morse Institute Library yesterday. Photo by Judy Royster

By Deanna Zammit
News staff writer

NATICK – Buffalo Bills quarterback Doug Flutie and his son, Dougie, yesterday cut the ribbon at “Dougie’s Corner,” the Morse Institute Library’s new autism resource center in Natick.

“Hopefully, we’re going to make a difference in awareness,” said Flutie, a Natick resident whose 7-year-old son was diagnosed with autism three years age, “because God knows we all need it.”

The new center on the library’s second floor is one of three autism resource centers in the region, and the only one in MetroWest. The center houses more than 200 educational items, including videotapes, information packets, an Internet-linked computer and 120 books new books on autism.

“This is the best thing in the world,” said Lisa Clover, whose son Andrew has autism. “When Andrew was diagnosed three years age, there was nowhere to go. At that I think I lived on the Internet.”

The Center, which has been in the works for a year, is the result of a collaborative effort by the library, the Flutie Foundation and The Family Voice.

The Family Voice, a support and advocacy group for children with autism and their parents, approached the library about a year ago to house some of it’s research books. Soon after, the group presented the library with a grant. A $10,000 pledge from the Flutie foundation followed.

The foundation money will be donated to the center over a period of several years, and the library will use it to update books, videos and other materials and incorporate educational programs about autism for the public.

Photo by Judy Royster
Doug Flutie stands with 7-year-old Dougie as he welcomes guests to the dedication of “Dougie’s Corner,” the new autism resource center at Natick library. Also attending the ribbon-cutting ceremony dedicating the corner were Flutie’s daughter Alexa, 11, and wife Laurie. Photo by Judy Royster

“They just have a lot of good information,” said Chris Campbell, whose son Richie has autism. “Because this is an ongoing thing. We’re constantly learning new things about autism and you really have to keep up to date.

The Center’s committee, composed of members of the library, the special education departments of public schools, and the Higachi School for children with autism, will determine which new materials should be included to fuel public awareness.

“We were really surprised how much fear we found and that our children weren’t really welcome into society,” said Rich Bissell, a member of Families Organizing for Change, an advocacy group for families with disabled children.

His son Eric has cerebral palsy. Eric’s twin brother, Aaron, has developmental disabilities.

What Dougie’s Corner is doing it “letting people know that children with disabilities are people first, are children first,” Bissell continues.

Clara Claiborne Park, the Autism Awareness Day’s keynote speaker and author of “The Siege,” defined autism through her experience of raising her now 40-year-old daughter, Jesse.

“Autism is when your 2-year-old daughter looks straight through you to the wall behind,” said Part, “Autism is when your 11-year-old daughter fills sheet by sheet with long division. Division by three, by 11, by 17.”

Park described her involvement with her daughter’s development as a siege, “because it was like assaulting a walled city.”

Today, Jesse is an accomplished artist whose brilliantly colored paintings of architecture incorporate the autistic person’s demand for precise detail. One sold for $1,000, and her mother is hoping for a New Year City art show.

She also works 27 hours per week in a college post office.

Park was quick to remind the audience that all this did not come overnight. The siege was long.

Educating a child with autism is a lifelong building block process. When Park started there were no resource.

There was no special education.

There was no autism resource center.

When you child is diagnosed with a disability, “You have to give up a lot of dreams,” said Bissell, who once dreamed of having the first set of twins in the NFL.

“And then create new ones,” his wife, Cindy, chimed in.

Bissell’s Meet Doug Flutie

Eric and Aaron Meet Doug Flutie!
Eric and Aaron Meet Doug Flutie!
Rich and Doug talking football
Rich and Doug talking football