It's a mark of a
medical miracle -- and a distressing fact.
Babies born in a polluted neighborhood on the south side of
Endicott have an alarming rate of heart defects: The state
Department of Health documented at least 15 cases over a 17-year
period ending in 2000 in a neighborhood of about 2,600 people --
more than double the norm.
And, there are more.
A preliminary assessment, tapping readily available information
from the Congenital Malformations Registry, did not tally recent
cases like Deron's.
Hours after Deron was born, doctors explained the news to his
disbelieving parents. The arteries to his heart were reversed. If
they were not repaired immediately, he would die.
"It turned from one of the best days of our lives to the worst,"
said his father, Kevin Every.
While the study in Endicott has highlighted an area of special
concern, congenital heart maladies -- the most common of all birth
defects -- are everybody's problem. The heart is one of the body's
most complicated organs. It develops early in pregnancy, between
four and eight weeks, sometimes before the mother even realizes she
is pregnant. There are a lot of things that can go wrong during that
time.
Nearly one in 100 babies are born with some sort of heart
deformity. They range from murmurs and leaky valves to transposed
arteries and missing chambers. Life-threatening cases such as
Deron's affect two to four babies for every 1,000 born.
Serious maladies are sometimes obvious. The baby may be bluish or
have trouble breathing. Other times they are subtle: a weak pulse or
a murmur detected only through a stethoscope.
When Deron was born at Wilson Memorial Regional Medical Center in
Johnson City, there was no outward sign of his dire condition.
"We thought he was a healthy baby," Kevin Every said. "I was
numb. I didn't understand what was happening. No way did I think it
was something that would affect him and us for the rest of our
lives."
Deron's mother, Tiah, was in her hospital bed recovering from a
Caesarian delivery when doctors told her they were arranging to
transport her infant son to Syracuse for open heart surgery.
"I'll be damned if you are taking my child without me," she said.
She signed a ream of paperwork to get discharged against her
doctor's advice and followed the ambulance north on Interstate 81 in
a van prone to overheating.
The surgery was difficult. Deron's arteries were transposed. He
had other defects as well.
"It was a very complicated set of circumstances," said Dr. Frank
Smith, a pediatric cardiologist from Syracuse. "It was a very
touch-and-go situation." In June of this year, they opened Deron's
thick scar to do more repairs. As he grows, he will need additional
operations to make adjustments to his growing heart.
For now, he is doing well. The family has moved from Endicott. He
toddles around their home in the Town of Dickinson, soaking up
attention from older brothers and sisters, and asking to be picked
up using monosyllables and outstretched arms.
Nagging doubts
There are 100 or more ways a heart can be defective. Often,
defects can be treated with medicine and certain restrictions. Other
times drastic measures are necessary.
When Nicholas Patricia was born on Dec. 3, 1991, at Wilson, his
mother noticed something odd.
"I thought, 'Boy, this baby looks blue.' But I had never had a
baby before, so I just thought that is what they look like," said
Karen Patricia-Iby, an Apalachin resident.
They took him away to get cleaned up and checked. He didn't come
back.
Instead, he was rushed to Syracuse for a procedure to stabilize
his condition, but he would need more. Soon they were arranging an
airlift to New York City, where a team of specialists waited. His
tiny heart, no bigger than a cherry tomato, became the exclusive
focus of a team of specialists during a seven-hour surgery to detach
the major arteries and stitch them to the proper chambers.
Now, Nicholas is 13. A long, rope-like scar, like Deron's,
stretches down his chest, but it doesn't slow him down. He is an
avid soccer player, and his mom is an avid fan. But sometimes, when
she watches him sprint down the field, doubts nag her.
She knows of similar stories without happy endings.
When Joey Santacrose was born on April 9, 1986, at Lourdes
Hospital in Binghamton, he appeared healthy. Weeks later, an exam
revealed a faulty heart valve. Heart valves are small -- like the
petal of a clover leaf -- but critical.
For 13 years, he was able to manage the illness with checkups and
by avoiding strenuous lifting. He grew from a baby to a boy with
boy-like interests. He loved learning about endangered species and
became especially knowledgeable
about whales. He ganged up on his dad with his twin brother.
Above all, he loved sports, which became a natural outlet for his
competitive drive. Strenuous lifting was out. But running was OK,
doctors said, as long as he kept hydrated.
He grew into a strapping adolescent who excelled at basketball
and track, and flourished as a team leader on the B.C. United Force
youth soccer team. When he was older, after his heart stopped
growing, surgeons would implant a new valve to fix the problem once
and for all.
He didn't make it. Without warning - and despite a disciplined
routine to keep hydrated -- he collapsed and died minutes after an
indoor soccer tournament in December 1999.
"I'd give anything to have my son back," said his father Jim
Santacrose, a devout Christian. "He's in a place where we all want
to be."
Searching for clues
Joey grew up on Mersereau Avenue in Endicott, less than a mile
from where Deron lived on Tracy Street.
Deron's old neighborhood, where scientists documented the high
rates of heart defects, is tainted by a subterranean plume of
chemical vapors leaching from the former IBM Corp. campus on North
Street. Near the time of Deron's birth, after testing showed vapors
were wafting into basements to the south, IBM had begun installing
systems to divert the fumes from more than 430 properties.
When Tiah was pregnant with Deron, she sometimes spent the better
part of the day in the basement, doing laundry for her family of
six.
The Everys think exposure to the pollution is responsible for
Deron's defective heart and other major illnesses in the
neighborhood. This occurred to them while they were staying at the
Ronald McDonald House in Syracuse while Deron was recovering from
his first surgery.
"We instantly recognized that four out of the seven families
staying at the house were all from the Endicott area, and their
children were born with defects also," Kevin Every said.
Federal and state health officials say they don't know to what
degree pollution may have been a factor in the birth defects, or
similar spikes in rates of kidney and testicular cancers in the
neighborhood and an area immediately to the west, polluted with
industrial solvents from an unknown source. They are designing more
studies, including thorough evaluations of each case, in search of
answers.
Exposure to trichloroethylene (TCE), one of the major pollutants
in Deron's former neighborhood, is a primary suspect. Evidence has
linked the chemical, once widely used in the electronics industry,
to the types of defects found in the Endicott area, according to the
Department of Health report.
Family history may play a role in some cases. But most heart
defects are likely caused by something else, Smith said. That could
include exposure to something harmful in the environment that is not
yet fully understood. Genetics may make certain people more
vulnerable to problems from environmental exposures, he added.
"Even in this day and age, we still cannot pinpoint the cause,"
he said.
The Everys are part of a group of residents and businesses
negotiating a settlement with IBM related to damages from the
pollution. The lawyers will not comment on the case and have asked
clients like the Everys not to share their ordeal with the public.
The request for secrecy does not sit well with the Everys.
"It's not about the money. It's about little kids suffering,"
Tiah Every said. "Something has to be done about that."
twilber@pressconnects.com
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