Noah's hope Family honors memory of tot who fought to survive rare birth defect
By Denise Bachman dbachman@observer-reporter.com
BETHEL PARK - When Noah
Angelici entered Children's
Hospital of Pittsburgh of
UPMC on Sept. 8, 2006,
doctors told his parents
that he'd probably stay just
overnight.
But the 14-month-old ended
up spending the next 15
months in pediatric
intensive care, finally
released at the request of
his parents, Adam and
Jennifer Angelici, so he
could die in his Bethel Park
home.
On Dec. 1, 2007, Noah passed
away from complications of
Twin to Twin Transfusion
Syndrome. He was surrounded
by medical personnel,
hospice volunteers, his
extended family and his
identical twin brother,
Jackson.
Although his life was
short-lived, Noah fought a
courageous battle to
survive, inspiring many
others along the way. His
father even nicknamed him
Noah Balboa, after Sylvester
Stallone's character in
"Rocky."
As Noah's maternal
grandmother, Jane Klimchak
of Venetia, said, "In the
short 21Ú2 years that Noah
was here physically, he
lived a lifetime. He was the
most incredible little boy
in the world."
Twin to Twin Transfusion
Syndrome is a rare condition
that affects identical twins
with a shared placenta. One
fetus, known as the donor,
continuously "gives" blood
to the other twin, known as
the recipient, through
connecting blood vessels on
the placenta, resulting in
twins of markedly different
sizes.
The boys were delivered at
35 weeks on June 24, 2005,
after they both experienced
a significant drop in
amniotic fluid. Noah was the
donor twin. He weighed 2
pounds, 8 ounces, and was
anemic. Jackson weighed 5
pounds, 12 ounces, but he
was getting too much blood.
"Jackson came out crying,
then he started grunting,"
Jennifer said. "Noah was
white as a sheet," and
required an emergency
intubation.
"Both babies were in bad
shape," Jennifer said, but
Jackson was released 10 days
later, and to this day, he
is a healthy, rambunctious
soon-to-be 4-year-old who
takes great pleasure in
showing off photos of his
twin brother.
To raise awareness about
Twin to Twin Transfusion
Syndrome and honor Noah's
memory, the Noah Angelici
Hope Foundation was
established by Dr. Luke
Taggart and Noah's family.
On June 15, the second
annual Noah Angelici
Memorial Golf outing will be
held to benefit the
Children's Home & Lemieux
Family Center and the Fetal
Hope Foundation.
Although TTTS can occur at
birth - when the umbilical
cord is clamped after
delivery, the other twin can
get a rush of blood - Noah
and Jackson were diagnosed
when their mother was 12
weeks' pregnant. The
original ultrasound detected
a noticeable size difference
in the twins, and three
weeks later, another
ultrasound showed they had
grown farther apart.
Some physicians suggested
terminating the pregnancy;
another said they could tie
off the amniotic fluid to
Noah. Others said let it
ride.
They let it ride.
Jennifer was on bedrest the
entire pregnancy. She lay on
her left side and drank
protein shakes, and she went
to Magee-Womens Hospital
three times a week for
ultrasounds.
While in utero, Noah
developed an enlarged heart
- a condition that usually
affects the recipient twin -
that also required weekly
echocardiograms.
"At 24 weeks, they told us
he wasn't going to make it,"
Klimchak said. "I said, 'A
miracle can happen.'"
After he was born, Noah was
placed on a respirator
because his enlarged heart
was impeding his lung
development.
"With him, there were really
a lot of issues," said Dr.
Fred Sherman, president of
the medical staff at the
Children's Home and director
of the Cardiology Fellowship
Training Program at
Children's Hospital.
Sherman said Noah was too
premature to immediately
undergo a heart operation,
so doctors waited.
"I fear that that waiting
period contributed to his
later problems," Sherman
said. "His major problem
became lung disease. That
ended up eventually taking
his life."
Noah spent all but about
four months of his life
either in the hospital or in
Transitional Infant Care at
the Children's Home, where
Jennifer Angelici learned to
care for her son. She
learned how to undress and
bathe him with all the lines
that protruded from his tiny
body, and she learned how to
change his tracheotomy and
feeding tube.
"I tried to nurse him, and
every once in a while he
would, but there was a
threat for aspiration,"
Jennifer said. "For four
months he was intubated, so
his sucking ability was not
there."
When Noah came home on June 23, 2006, he was thriving. Klimchak said he loved to watch "Shrek," and she remembers his hearty belly laughs whenever certain scenes would appear.
"He had lines coming out
from everywhere, but he
always smiled," said
Klimchak, whose memories are
confirmed in the countless
number of photos of Noah
that hang in the Angelicis'
home.
But when Noah became ill
again in September 2006, he
was unable to get off the
ventilator.
Finally, the family, who
lived in fear every day of
losing their son, grandson
and nephew, was told Noah
wasn't going to make it.
"He was just a lovable
child," Klimchak said.
"Other families will be
better off because Noah
lived, and the Children's
Home will always be a
benefactor."
Copyright, 2009, Observer
Publishing Company of
Washington, Pa.
