The Children’s Publishing Center
South Grafton Elementary School
South Grafton, MA
By Cynthia Bissell
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
Trading old dreams for new ones.
By Richard Bissell
I had just taken a bite of my turkey sandwich when my wife, Cindy, came in the front door. I could tell she was fighting back tears. “It’s Eric,” she blurted out and broke down.
We had premature twin babies in the Neonatal Intensive Care Unit (NICU). Born after only 26 weeks, they weighed a mere two pounds each. They had been in the hospital for close to six weeks, fighting for their lives.
I waited for Cindy to calm down enough to tell me what was happening. I needed to know, but at the same time I was afraid to hear. My mind reeled as she gave me an explanation I couldn’t really comprehend. I felt as if the breath had been knocked out of me. There was a tightness in my stomach and chest. The official diagnosis was periventricular leukomalasia with intracranial hemorrhages. I felt trapped by the words-fancy words for the type of brain damage that leads to cerebral palsy. It was all so hard to believe.
“It’s all right,” I began. It was hard to move my mouth. “It will be all right. We will work it out.”
Working it out
We had been splitting shifts at the NICU. Cindy stayed during the day; I did the night shift. We are both nurses at the same health care facility. Our employer had been very understanding, working out our schedules to give us as much time as possible with our babies.
Robotically, I made my way to the NICU. It was 11:00 PM. The hospital was quiet and the lights were dim. Glancing at the babies in the “Growing Preemie” section, I wondered if my sons would ever graduate to this haven where stable infants wait to go home.
The NICU was busy, as usual. Doctors and nurses walked briskly between incubators, checking IVs and respirators, turning off alarms and discussing treatments with one another in hushed voices. I greeted some familiar nurses and walked into the room our boys shared with 10 other incubators. All the fragile infants were enclosed in their plastic “houses” with each baby’s name on the side.
Our boys had a multitude of problems, mostly related to prematurity. Very susceptible to infection, their bodies could not regulate their own temperatures. They could not be handled much because of raw, immature nervous systems. Some days all we could do was reach in through holes in the incubator sides and lightly touch their heads. On good days, we could hold them very gently for five or 10 minutes-very difficult conditions for normal parent/child bonding.
I sat down next to Eric’s incubator and peeked in. A tiny bundle, he was sleeping peacefully, breathing on his own now with a nasal cannula taped to his nose for extra oxygen. He was hooked up to monitors to alert the nurses if he stopped breathing or if his heart rate dropped, both of which happened many times a day. The nurses would rush over and calmly shake him, a little “reminder to breathe.” It had taken us a while to accept this routine.
I stuck my hand through the porthole of Eric’s incubator and lightly touched his head. He stirred slightly, then went back to sleep. As I sat there, I thought of the necrosis (tissue death) and bleeding in his tiny brain. I walked over to Aaron’s incubator, located right next to Eric’s. Still on a respirator, he was too weak and fragile to breathe on his own. Looking at my sons, I had many mixed emotions: anger that they were not healthy and strong; fear and sadness because they were so sick, fragile and vulnerable. Mostly, however, I felt an intense love and desire to protect them from harm.
It was so difficult to stand by as they were bombarded by constant prodding and probing required for a multitude of medical procedures. Their tiny heels were black and blue from multiple blood tests. IVs were repeatedly stuck in their little arms. Even eating was an unpleasant task: Tubes stuck down their throats allowed Cindy’s breast milk to be poured into their stomachs.
Patterns of crisis
We seemed to get into a pattern of good and bad days. Usually every few days brought a crisis with one baby or the other. Two steps forward, one step back; sometimes the other way around.
Aaron’s most difficult time came when he was taken off the respirator. It was so hard to watch him struggle for every breath, his little eyes wide with fear. His windpipe was inflamed and scarred by the respirator that had saved his life. Eventually, we decided to take him to see a throat specialist for an evaluation and possible tracheostomy. Leaving Eric at the “home base” hospital with relatives, we followed the ambulance to another hospital. We met with the surgeon, then helplessly watched as Aaron was transported into surgery. Each passing minute seemed slower and more frightening than the last as we waited-keeping in constant touch with “home base.” Finally the surgeon called us, “We had to do a tracheostomy, but he did just fine. You can see him when he’s out of recovery.”
It was then that we realized how strong Aaron is. He has a tremendous will to survive. After the surgery, seeing him with a tracheostomy was upsetting, but, at the same time, we were relieved that he looked so comfortable. He was at ease for the first time in weeks, neither having a tube down his throat nor having to struggle to breathe. With both boys so unstable, however was difficult to see any light at the end of this long tunnel.
The tunnel’s end
The boys at four now weigh in at around 30 pounds each. Aaron breathes through a tracheostomy tube and has some residual respiratory problems, but in all other ways he is like any other toddler, exploring and examining every new object as if it is some scientific breakthrough. Unable to vocalize, he makes all kinds of interesting creative noises and grins at his own cleverness.
Eric is certainly his own little person. Because of spastic quadriplegia cerebral palsy, he receives intensive therapy four times a week. He is unable to sit up or crawl, and even has trouble rolling over. His smile comes easily, however, and he is a happy boy. I can see the intelligence in his eyes.
The twins have strengthened us and they have taught us what is really important in life. When we had learned that Cindy was pregnant with twin boys, I had had dreams of big strapping football players: the first twins in the NFL! We would do so much together-run, bike, watch the games on Sundays. All these dreams disappeared when I had to face what I saw then as a grim truth.
Although things have calmed down a bit, we still have good days and bad days. More challenges lie ahead. But I wouldn’t trade our boys for Super Bowl Twins! As I wrestle and play on the floor with them, many of the bad memories fade.
I look at them now and think back to that terrible summer night when Cindy went into premature labor. I realize how truly lucky we are to have these two special gifts. I know now that I do not have to give up all my dreams for the twins. I just let them create new ones. EP
Richard Bissell and his wife Cindy are nurses and work together at the Newton and Wellesley Alzheimer Center. They live with their twin sons, Eric and Aaron, in Grafton, Massachusetts.
GRAFTON – The doctors said Aaron Bissell would never talk. Aaron Bissell had a second opinion.
With a dip of his chin, the 3-year old covers his tracheostomy, forces air past his vocal cords, and describes the merits of his latest toy car. Or asks to watch the “Jungle Book” video again. Or screams with delight as he executes a dramatic swan dive from the couch.
His mother, Cynthia Bissell, remains calm.
“He’s fine; he does that all the time,” she says.
Twin brother Eric watches the performance from the floor. Aaron makes a crash landing, then rolls over to Eric. They compare the latest in toy truck technology. They begin to converse, their language a private mix of young English and toddlerese that their parents say “sounds like we have ducks in the living room.”
“I’m worried about teasing as Eric gets older,” his father, Richard Bissell, acknowledges. “His speech isn’t perfect.”
But as this couple will tell you, life isn’t about perfection, even when it appears to be.
Rich and Cindy Bissell fell in love while working as nurses at Newton-Wellesley Hospital in late 1991.
“I was actually his boss,” said Cindy. “I always joke that he wanted a good evaluation, so he married me.”
The couple rode their motorcycles together. They liked to work out together and go on long runs through the hills. They were engaged in February 1992 and married in Bermuda that July. By the summer of 1993, the Bissells were expecting twins.
But only 23 weeks into pregnancy, Cindy went into labor.
“We knew, as nurses, that they were not viable at 23 weeks,” Cindy said. “We expected to lose the babies. We were devastated.”
Twins, for all their problems, are smiling, eating, laughing
At Memorial Hospital, Cindy was given magnesium sulfate to halt her labor. Three critical weeks passed, pushing the twins a little further across the threshold of viability. But Cindy developed chorioamneitis, a streptococcal infection that posed a grave risk to her unborn children. Doctors decided to induce labor.
Eric and Aaron Bissell were born in Memorial Hospital’s neonatal intensive care unit on July 28, 1993, more than three months early. Each weighed 2 pounds. Both suffered from abnormally low blood pressure, respiratory distress, bleeding in and around the brain, jaundice, and anemia.
Slightly more than 10 percent of the 3.8 million babies born in the U.S. each year are considered premature, which is defined as being born at or before 37 weeks of gestation. Better drugs, advanced respirators, improved surgical techniques, and growing experience allow doctors today to save many Premature babies, even some as small as one pound. Whether an infant will have physical and mental handicaps depends primarily upon the degree of prematurity and secondarily upon its weight, according to Dr. Doug Derleth, a neonatologist at The Mayo Clinic in Rochester, Minn.
Those born after 30 weeks gestation generally survive and thrive with few if any long-term medical problems. Of those born before 25 weeks, more than half that survive have some degree of handicap, often severe. For preemies born in the 25 to 30 week range, survival and birth outcomes have been steadily improving.
For Aaron and Eric Bissell, born at 26 weeks, life came with problems.
The need for a breathing tube left Aaron with damage to his trachea and windpipe. Because scar tissue blocked much of his airway, doctors gave him a tracheostomy. He also had bronchopulmonary dysplasia, a chronic condition that affects his breathing. He came home still dependent on oxygen and needing 24-hour nursing care.
Eric’s problems were even more serious. Tissue around his brain ventricles had been damaged due to insufficient blood flow and lack of oxygen, a condition known as bilateral periventricular leukomalasia (PVL). In September 1993, doctors told the Bissells that Eric had spastic quadriplegic cerebral palsy. He will most likely never develop the motor skills his brother has. It is still unclear how much mental retardation if any, was caused by the brain damage.
“All your expectations that are the bedrock of parenthood have just gone down the drain,” said Rich, the son of a Protestant minister from upstate New York. “You’re dealing with anger and denial. You ask yourself, ‘Why did this happen to me? How could God do this to me?’
There were no easy answers, just two small boys who desperately needed the best their parents could give.
The Bissells traded in their red Jeep for a van equipped for the handicapped. Leisurely runs through the hills gave way to a blur of medical appointments, insurance forms and phone calls. Eric proved to be a fussy, colicky baby who had difficulty sleeping, so Rich and Cindy took turns pacing the floor with him throughout the night. Aaron has been hospitalized twice for pneumonia and must undergo a bronchoscopy under general anesthesia every six months. Both boys have had surgery for crossed eyes.
For Rich and Cindy, the emotional strain was almost too much. Rich began seeing a therapist. The couple went through long, periods when they hardly spoke to one another.
But Aaron and Eric kept them going. Slowly, the boys gained strength and weight. The traumatic memories of what might have been gave way to the reality of children who, for all their problems, smiled, ate, laughed and talked.
“In the hospital, we found that we were just reacting to things,” Rich said. “We determined that, when we got home, we were going to learn everything we could.”
“We were very aggressive right up front with physical therapy and oxygen therapy,” Cindy said. “Our home looked like a miniature medical center.”
The Bissells prowled the Internet for advice, support and information.
“Aaron, particularly, was so medically fragile that I couldn’t get out of the house,” Cindy said, “The Internet was my lifeline, my link to the outside world.”
Some of what they found was simple. A California father, for example, mentioned that his state pays for the cost of diapers. Rich discovered that Massachusetts does too – but you have to ask.
Then there was the exotic. The Bissells learned about conductive education, which is beginning to receive attention in Canada and the United States. Developed by Hungarian Andros Peto, it is an intense therapeutic program that attempts to build new neural pathways in the brain through repetitive motion. They hope to have Eric attend a four-week session this summer.
The Bissell’s persuaded their insurance company, Pilgrim Health Care, to bring Memorial Hospital under their insurance blanket. Through the Department of Public Health, they enrolled the twins in an early intervention program in Milford.
Cindy ran across a doctoral thesis by a Cincinnati doctor who pioneered surgery to reconstruct the trachea. She contacted the doctor, who recommended a physician in Boston as a good choice for the difficult and delicate operation that should allow Aaron to speak without a tracheostomy.
“The problem with special needs is that there isn’t one phone call you make that takes care of everything,” Cindy said. “No one comes to your, door to tell you what’s available. There are child advocates, but you have to pay them. And we had drained every financial resource we had.”
The Bissells became a part of a support network that saved them from despair. They made friends with couples they met online. Cindy set up a home page on the Internet that helps parents care for a child with a tracheostomy. She and Rich wrote an article for Exceptional Parent magazine, offering hope and perspective to other parents. They began publishing a monthly newsletter to update family and friends on the boys’ medical and social progress.
Cindy has also begun working; part time at University of Massachusetts Hospital in Worcester as a family health supporter. The experimental program helps families connect with the services they need and educates doctors about the needs of families.
The twins have been busy, too. On Wednesdays, Eric swaps his wheelchair for a horse. Through the therapeutic horseback riding program at Holden’s White Oak Farm, he is learning to better control his body and improve his coordination. Riding “Duchess” is easily Eric’s favorite part of the week, said his mother.
As he watches Eric ride a horse or wrestles playfully with Aaron, Rich has begun to accept that, however different his children’s lives may be from what he imagined, each is a precious gift.
“It was hard at first not to aspire to normalcy,” Rich admitted. “But I’ve come to understand that Eric is multidimensional and that the cerebral palsy is just a very small part of what he is.”
Aaron and Eric are enrolled in the pre-kindergarten program at South Grafton Elementary School. They have made many friends.
“That, I think, is what makes inclusion in the schools so important,” Rich said. “Other children need to see Aaron and Eric. They need to see that they are people, too.”
At the mall recently, Aaron and Eric were doing a very normal 3 year-old thing — acting up. Cindy declared she would buy the socks if Rich would walk the boys out of the store. As she waited in line, Cindy noticed the attention her family drew as Rich pushed Eric in his wheelchair and Aaron walked alongside. Some shoppers paused to stare. Others averted their eyes.
“I don’t think people in the community realize what it means to be born premature,” she said. “Some resent the fact that our kids are in the schools and cost so much. And it’s true – insurance has paid out hundreds of thousands for each of them. But the other thing is that people don’t believe it can happen to them. And it can. It can happen to anybody.”
Preemie twins Aaron and Eric kept family going forward
Special needs teacher Susan McCullen works on motor skills with the twins.
For Aaron and Eric Bissell, born at 26 weeks, life came with problems. For their parents, Rich and Cindy Bissell of Grafton, Their lifestyle changed abruptly. But the struggles of the twins, now 3 years old, and their parents’ is truly inspirational. Telegram & Gazette photographer Steve Lanava spent some time with the Bissells and portrays some of the activities in a day of their lives.
Today’s preemies have better odds
Just a decade ago, Eric and Aaron Bissell might not have survived their early arrival in the world. Today, premature and low birthweight babies stand an excellent chance of not only surviving but growing up with few or no serious medical problems.
But when there are problems, their families can find resources to help them clear the medical, emotional and bureaucratic hurdles that often arise.
The improved odds for today’s preemies are the result of remarkable advances in technology and a lot of old-fashioned tender loving care.
“Sometimes people ask, ‘Why are you trying to save these babies?’ said Dr. Stuart Weisberger, a neonatologist at Memorial Hospital. “Well, because we’re getting better at it. A lot of them will make it through and make their families very, very happy.”
The key to survival, in many cases, is improved medical technology. Artificial surfactants are used to replace the protective fluid that normally coats and protects the developing lungs of newborns but is deficient in premature infants. Respirators equipped with transducers sense and automatically adjust to a baby’s breathing patterns. Steroids reduce the severity of hemorrhages in the brain.
At the same time, family-friendly hospitals give fragile young lives the benefit of a mother’s touch and a father’s voice. Around-the-clock nursing care ensures that babies are carefully monitored. Twins are often placed together, a practice that promotes weight gain.
In the dim light and hushed rooms of the neonatal intensive care unit, families give the medicine of love to their children. Love notes from siblings and parents cover plastic incubators and warm the cold, sterile touch of tubes. Stuffed animals, most bigger than the preemies themselves, keep watch alongside beeping heart monitors.
“All parental instincts are to care for and protect children,” said Kathleen E. Heffernan, a licensed social worker who coordinates care at Memorial Hospital’s neonatal intensive care unit, the most advanced unit of its kind in Central Massachusetts. “Parents come here and they’re separated from their children. We teach them how to connect at a distance.”
Here, families find the privacy they need to deal with the losses that come with premature birth — the unmet expectations, strains on relationships, and, sometimes, death.
LEVEL 3 CARE
Founded 22 years ago, the unit was expanded in June to a deluxe, 43-bed facility. It is the only Level 3 neonatal unit in Central Massachusetts a designation based on the availability of nursing care, surgical staff and equipment. There are isolation rooms to protect the most fragile infants from infections, and a continuing care nursery for those almost ready to go home.
Fortunately, most premature infants do go home. And most have few, if any, long-term medical needs. For the families they go home to, however, the financial and emotional struggle of dealing with such fragile young lives has often only just begun.
Chances of Survival – Shown are survival rates for premature infants who receive neonatal care in the 1990’s. Normal human gestation is 36 to 40 weeks.
COMPLETED WEEKS OF GESTATION AT BIRTH SURVIVAL
21 weeks and less 0%
22 weeks <<1%
23 weeks 5-25%
24 weeks 40-60%
25 weeks 50-80%
26 weeks 80-90%
27 weeks >90%
30 weeks >95%
34 weeks >98%
Source: University of Wisconsin and The Center for Perinatal Care at Meriter Hospital, Madison, Wisconsin.
The process begins in the hospital. Heffernan helps families apply for Social Security benefits. She dispenses information on transportation, housing, employment, insurance and how to use the federal Family Leave Act. She refers parents to the regional office of the Department of Public Health, which is the lead agency for providing services and referrals to children from birth through age 3.
“For some families, especially the first time, it’s a whole new world,” said Daniel de la Torre, a case manager at DPH’s West Boylston office who helped Cindy and Rich Bissell obtain help for their sons. “If I had to think of a model case of a family that has used the system successfully, recognized the gaps and overcome the gaps, the Bissells would be it.”
Each family, de la Torre said, brings its owns hopes and fears to the process. Some are proactive, seeking out every source of assistance available. Others are in denial, fearing a problem exists but not wanting to confront it.
Many recognize there is something wrong with their child, but fail to appreciate how that will affect their finances and lifestyle. In a growing number of cases, especially with families from Eastern Europe and Latin America, there are cultural barriers. For them, government intervention is a thing always to be feared.
“We’re looking at the needs of the child,” said Karen Ayers, a DPH supervisor. “Is the family’s insurance adequate? Do we need to look at public health benefits or food stamps? Is there a pediatrician in place? Do they need a home health aide or do they need to make adaptations to their home for a wheelchair or a stairlift?”
DPH caseworkers must walk a fine line — educating families in need without frightening them. They rely upon pediatricians and hospitals for many referrals, but other children are picked up much later, when day care workers or teachers notice developmental delays.
“Another way we get referrals is by word-of-mouth, ” said de la Torre. “Families tell a relative or friend. It’s less intimidating. I don’t think of what we do as a ‘campaign’ but as an ongoing consciousness-raising.”
Following is a list of programs available from DPH and other providers. Information about all of the programs is available from area DPH offices: