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One Night at the Bissell’s

Legislative Breakfast, 2000

Richard Bissell’s speech to the Massachusetts Legislature at the State House in Boston MA.  The goal was to help legislators understand what families deal with on a daily basis. 


My name is Rich Bissell and I am the father of twin six-year old boys who have disabilities.

In July of 1993, my wife Cindy gave birth to identical twin sons who were born 3-1/2 months too soon. Both boys had many of the problems common among premature infants. Eric’s most significant problem is spastic quadriplegic cerebral palsy. Aaron’s problems are mostly respiratory, he has bronchopulmonary dysplasia and subglottic stenosis. Aaron’s airway was damaged from the ventilator tube when he was in the Neonatal Intensive Care Unit (NICU). The ventilator certainly saved his life, but no medical procedure is done without the possibility of complications. Aaron had his tracheotomy surgery at one month of age. His condition was complicated by bronchopulmunary dysplasia and he was oxygen dependent for several years. After three months in the Neonatal ICU, the boys finally came home.

When I was thinking about what I was going to say today I looked back at my journal to see what life was like during those first few hectic years. I would like to share with you a small part of that journal. This is pretty much word for word the original journal entry made back in 1994.

February 10th 1994

1:00 AM – The perching alarm has been sounding for about a full minute before I am able to pull myself out of a dreamless sleep. I know it has been ringing because my wife has already managed to make her way to Aaron’s bedside and is in the process of checking his lead wires before I am even out of the bed. It is my turn to do the night shift and I have failed miserably in allowing her to get some much-needed sleep. “Sorry Hon,” is all I can manage as she is already making her way back to bed. The alarm is no longer ringing and Aaron is sleeping comfortably. One of his monitor lead wires had come loose and the apnea monitor was no longer getting a signal telling it that Aaron was breathing.

2:15 AM – I wake up to the incessant alarm of Aaron’s saturation monitor. I wipe the sleep groggily from my eyes and check the time. All of Grafton is in restful sleep and I am envious. It was only a few months ago that we brought our twin boys home from the hospital and neither Cindy nor I have gotten a full-nights sleep since. I quickly suction Aaron turn him on his side and go back to sleep.

3:25 AM – It feels like I have just gotten back to sleep when I hear Aaron’s “Darth Vader” like respirations. Whenever his secretions build up in his airway, his breathing gets noisier and noisier until he is suctioned, making him sound like a miniature replication of the Dark Knight from the popular Star Wars movies. I check his oxygen saturation; it’s 92 and falling. If I do not suction him soon the low saturation alarm will inevitably sound. I turn on the small night light next to his crib and look at this tiny miracle. He has put on a lot of weight over the last few months and is now up to a whopping 8 pounds. The heavy drone of the suction machine is a familiar sound and he does not stir. I clear the tube with normal saline and then suction just deep enough to clear his trach tube. He barely even stirs, having learned from birth that he would have lots of interruptions during the night. His sats crawl back up to 97; his color is good, his heart rate and respirations, normal. All is well.

I take a moment to check on his brother Eric. Eric is sleeping restlessly and looks like he will soon be up. It’s been four hours since we last fed him, or was it Aaron who ate last. They look identical in every way when they sleep. I take a moment to write down the time and saturation level in Aaron’s log and then crawl back into bed.

4:30 AM – Eric is fussing and hungry. I hurry to him, before Aaron is woken by his cries. I quickly make my way to the kitchen and pop a previously prepared bottle into the microwave. As Eric eats, the constant beat of Aaron’s heart rate monitor reassures me that he is fine.

Tomorrow will soon begin the continuing routine of medical equipment, therapies, medical bills, and a constant parade of therapists, nurses, and case managers, as well as the administration of medications, treatments, and feedings that fill our days from dawn till dusk. That, coupled with the many nights of broken and nonexistent sleep, and working full-time jobs, make for cranky coffee filled mornings at the Bissell house.

But for now, Eric’s belly is full and he asleep. The constant hums and beeps of Aaron’s machines lull me back to sleep. My last thoughts are not of medical equipment, sleepless nights, or surgeries. The thoughts that send me to dream land are of two beautiful miracles that are sleeping in those cribs next to our bed. In the morning, when Eric and Aaron are looking up at me, my heart will fill with joy and pride. On the scale of life this joy easily tips the weight of all the sleepless nights and all the worry that I could ever imagine.

Even after six years of sleepless nights I still feel that way.

A few months ago my wife and I received a call from a family living in Springfield who had just brought home their three-month old daughter with a tracheostomy.  Since their child has come home, they have had many sleepless nights, medical equipment problems, insurance difficulties, and cranky coffee filled mornings.

I would like to be able to tell them that things are much better than they were six years ago and that there is a lot more support out there. But it is really not so. Many nursing agencies are short staffed and they are forced to either cut back or go out of business. A family who needs 8 – 16 hours a day of skilled nursing are lucky to get any.

For families who need a PCA or personal care attendant the situation is even worse. Nursing agencies are forced to compete with McDonalds for staff that have the responsibility of caring for our children.

Most of us would agree that children belong at home with their parents. A parent of a medically involved or disabled child has the same love for that child as the parent of a typical child does.

In order to live at home many of these children require a certain level of specialized care. It is my hope that we can work toward a goal of allowing all children to have the best possible support in their own homes.

I want to thank all of you for coming out today and hearing our stories.

Content Copyright of Richard C. Bissell

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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.

CINDY, MOTHER OF 26-WEEKER ERIC, TWIN TO AARON

_________________________

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.
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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.

RICHARD AND CYNTHIA, MOTHER OF 26-WEEKER ERIC, TWIN TO ERIC

_________________________

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.
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Families Organizing for Change

grafton

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
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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 www.bissells.com.

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.

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