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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

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

Home, Sweet Hospital

The Boston Globe Magazine
Mind and Body / By Richard Saltus
June 7, 1998


Although he needed tube feeding, constant oxygen, treatment for seizures, and round-the-clock attention, Scotty Luce spent the last six years of his short life at home.

Scotty’s parents, like an increasing number of parents today, took on the immense task of rendering hospital-like care at home — aided by doctors, nurses, therapists, and others involved in the rapidly growing world of pediatric home care. Their reasons are similar to the one Scotty’s mother, Patricia Luce, gives: “He needed a home environment — it was important for him to have a mom, a dad, and a dog.”

Scotty, who had a rare genetic condition that afflicted nearly every organ in his body, died in 1996. He made it only to age 12. He slept in a hospital bed and used a wheelchair; a line for nutrition led into his heart, and other tubes led to his stomach and intestines. He was cognitively impaired. Altogether, he was “medically fragile” — a description of infants and children so ill that they are living on the edge, and often only with high-tech life-support equipment.

As more and more infants survive extreme prematurity or illnesses that would have killed them in the past, families are facing the question of caring for them after the immediate crisis passes. “There’s a lot of high technology that didn’t exist in the past, and so I think as a result of that, we have a new breed of children that exist in the World today,” says Patricia Luce, who lives in Worcester. She has founded an initiative called Family Partnerships, to assist families in pulling together the sometimes widely scattered resources needed for successful home care.

Until fairly recently, children with chronic, severe conditions requiring expert care and specialized equipment “remained in hospitals and institutions, because there was no support for families or financial support to have the child go home,” says Dorothy Page, a family nurse practitioner who heads the pediatric homecare program of the University of Massachusetts Medical Center, in Worcester. She is also president of the National Association of Pediatric Home and Community Care, which she founded along with a UMass physician, Robert G. Zwerdling. The association is involved with education and research on home care of children and with setting standards.

The move toward bringing medically fragile children home stems in part from activist parents who pressed public agencies to help make home care possible. Federal Medicare and federal-state Medicaid reimbursement policies swung toward home care as new technologies and training of parents made it not only possible but cheaper for these children to stay at home. The newly available money, in turn, prompted a home-care industry that had already grown up around geriatric needs to diversify into pediatrics.

A broad range of medical conditions afflicts the infants and children who are being cared for at home. They include lung problems caused by prematurity or, sometimes, by the respiratory treatments for prematurity. Many of these children have tracheostomies — openings through the neck into the windpipe — through which they are connected to ventilators. The tracheostomies need constant attention.

There are children with infections that demand long courses of intravenous antibiotics and young cancer patients on chemotherapy. Other children can’t eat, and they get all their nutrients through tubes. The care of such youngsters can be complex, demanding, and tiring, and the impact of the entire venture on the family is enormous.

“The stress and disruption of your life is indescribable,” says Cynthia Bissell, mother of twin 4 1/2 year-old boys, Eric and Aaron, who were born 3 1/2 months premature and suffering multiple disabilities. Aaron had a tracheostomy and was on a ventilator until last summer to help him breathe.

“We live in a town house, and we had what was like a mini-NICU [neonatal intensive care unit] set up in our living room,” Bissell says. “We had nurses, physical therapists, occupational therapists, speech therapists, caseworkers, coming in and out of the house all the time. There is no privacy.”

Today, the twins attend a special-needs preschool. Eric, who has cerebral palsy, uses a wheelchair, and Aaron is receiving therapy for his speech, which was delayed because of the tracheostomy.

Even though Bissell and her husband are both nurses, she says they were initially intimidated by all the procedures they had to learn. “But you’d be amazed at how quickly parents become experts in their kids’ care,” the Grafton mother says.

Like Luce and like other parents who make such a huge commitment, the Bissells believe the rewards of caring for medically fragile children at home are great. “We feel very strongly about this,” says Bissell, who has founded a group called Families Organizing for Change that is funded primarily through the state Department of Mental Retardation. The group is aimed at generating support for families caring for children at home.

Besides DMR, other agencies involved in home care include the state Department of Public Health, Medicaid, the Massachusetts Commission on the Blind, and various private groups. Family Partnerships, in Worcester, can be reached at 508-756-7467. The National Association of Pediatric Home and Community Care, in Worcester, is at 508-856-1908.

A World Wide Web site established by Cynthia Bissell offers information about caring for children’ with tracheostomies. It is called Aaron’s Tracheostomy Page, and the address is


A program for disabled children to lean on


Because of their tender age, disabled children need so much more than special medical care. That’s where the Family Health Support Program, a collaboration between UMMC and the Massachusetts Department of Mental Retardation, comes in. Staffed by two family health supporters who are personally experienced with the challenges of disability, the program provides resources, referrals and, just as often, an ear to listen and a shoulder to lean on.

While similar programs have been developed by parents in the past, “Ours is the first to integrate parents of disabled children and disabled ‘self-advocates’ into the medical team,” says Martin Young, PhD, associate professor of pediatrics and program co-director. The program was launched a year ago with a pilot in the division of pediatric neurology. Beth Rosen, MD, assistant professor of pediatrics and neurology, is the program’s lead physician. After completing a medical exam, she introduces one of the family health supporters to the child and parents. The health supporter speaks with the family to make sure all their questions regarding the medical visit and prescribed medical care are answered; she further asks if they need help with other concerns, such as special education, respite care, special equipment and therapies.

“We address anything and everything. And if we don’t have the answers, we know where to get them,” says Family Health Supporter Cynthia Bissell, the mother of twins with special needs. She and fellow Family Health Supporter Sandra Milyko have found that support groups and community support are critical components.


Milyko, who has cerebral palsy, also specializes in counseling families on self-advocacy. “Self-advocates are people learning to stand up for themselves in getting basic things – from jobs to health insurance to personal support – that most people take for granted,” she explains.

At the same time they are assisting families, family health supporters are educating the medical staff. Says Rosen, “Cindy and Sandy have been well-received by patients, and have informed me and other providers about what’s available outside of UMass.”


Preemie Twins a Challenging Gift

By Chris Sinacola
Telegram & Gazette Staff

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 Bissell, with her 3-year-old twins, Eric and Aaron, has set up a home page on the internet that helps parents care for a child with a tracheotomy.
Cindy Bissell, with her 3-year-old twins, Eric and Aaron, has set up a home page on the internet that helps parents care for a child with a tracheotomy.

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

Aaron Bissell gives his twin brother, Eric, a ride as he pushes his brother's wheelchair outside the Bissell home in Grafton.
Aaron Bissell gives his twin brother, Eric, a ride as he pushes his brother’s wheelchair outside the Bissell home in Grafton.

Special needs teacher Susan McCullen works on motor skills with the twins.

Special needs teacher Susan McCullen works on motor skills with the twins.

Rich Bissell clears fluid from Aaron's tracheostomy tube.
Rich Bissell clears fluid from Aaron’s tracheostomy tube.
It's dinner time for the twins.
It’s dinner time for the twins.
Eric gets a ride aboard "Duchess" during a therapeutic horseback riding program at Holden's White Oak Farm.
Eric gets a ride aboard “Duchess” during a therapeutic horseback riding program at Holden’s White Oak Farm.

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.


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.


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:

  • Healthy Start promotes early, comprehensive and continuous prenatal care for low-income, uninsured women.
  • Public benefits specialists help families obtain Social Security and Medicaid benefits as well as other health care coverage and assistance, including paying for hearing evaluations, hearing aids, and other costs not covered by insurance.
  • Early intervention program develops and implements strategies to support families with young children at risk for developmental delays. An estimated 14,000 children in Massachusetts are eligible for assistance each year under DPH definitions.
  • Family Ties is a parent-to-parent information and support network for families of children with special needs.
  • MASSTART (Massachusetts Technology Assistance Resource Team) assures the health and safety of technology-assisted children in schools by expanding skills, knowledge and training of teachers and nurses working with those children.
  • Massachusetts Genetics Program facilitates genetic screening, counseling, diagnostic and support services and offers information about the causes and prevention of genetic diseases and congenital anomalies.