A Life or Death Search

A life or death search for her family ties
4/10/2009
By Diane Carlton
The Monmouth Journal

ATLANTIC HIGHLANDS — Carol Barbieri, a resident here, and her twin
sister, Kathi, were told they were adopted around the third grade by
their parents. Not having much interest in finding her birth parents,
Barbieri said, “There was a part of me, as some adoptees will tell
you, that had a chip on my shoulder — ‘Well, she left me. Why should I
look for her?”

That is until 1991, when Barbieri’s then 14-year-old son, Jonathan,
now 31, was diagnosed with Wolff-Parkinson- White Syndrome — a cardiac
condition that causes the disruption of the heart’s normal rhythm.
During one of Jonathon’s episodes, he presented with an excessive
heart rate of 320 beats per minute.

When the cardiologist asked the Barbieris if there was a history of
the illness or sudden death on either side of the family, she
recognized that obtaining her husband’s medical history was as simple
as making a phone call to his mother. But, being adopted, Barbieri had
no way of knowing — or any easy means of finding out — about the
health history of her biological family.

Whether or not Wolff-Parkinson- White Syndrome was hereditary decided
Jonathan’s course of treatment and, ultimately, a life or death
scenario for the young boy. Essentially, sporadic — or non-inherited
cases — cases showed a higher risk for sudden death at the time and
the Barbieris were hoping for heredity.

The owner of two pure-bread Yorkies, Barbieri said, “I could more
easily find my dogs’ medical history than my son’s.”

The singer, songwriter, and performer, now 53, has spent nearly 20
years becoming an adoptee advocate for access to original birth
certificates in the state of New Jersey, something the state has
denied since 1940.

On Wednesday, April 1, Barbieri held a presentation at Borough Hall,
here, to tell the story of her race-against- time quest to locate her
birth family, inform other adoptees how they can help petition state
legislators and present her new song entitled, “Your Secret’s Safe
with Me” — a heartfelt piece that she considers her legacy.

Because the current law concerning adoption records in the state of
New Jersey was passed nearly 70 years ago and continues to reflect
social attitudes at that time regarding illegitimacy, shame and
secrecy, Barbieri’s search was daunting one.

She was told by doctors that Wolff-Parkinson- White Syndrome “skips
around in families” and that, if her son had it, it was very likely
that a sibling of hers would have it too. She knew that at least one
of her siblings, her twin sister, and her children did not have the
syndrome.

If the syndrome did not run in the family, Barbieri was told that
Jonathan would run an elevated risk of sudden death and that
corrective surgery should be performed right away.

The odds for survival, at the time, were 50 percent and it was advised
that the family wait as long as possible to allow for advancements in
treatment and procedure of the rare disease.

With the support of Jonathan, as well as son additional son
Christopher — then age 10, and supportive husband, Joe, 58, on the
home front, Barbieri set forth to question her adoptive relatives,
petition bureaus of records and vital statistics, and explore library
microfilms searching for any hint of her past.
The secrecy and privacy issues of the existing law forced Barbieri to
commit slightly dishonest transgressions which included lying,
cheating, stealing and assuming different identities. She did not care
if she got caught, Barbieri was strictly consumed with the process of
keeping her son alive.
“I was a victim of a system that was set up to protect everyone in the
adoption triangle except me,” she said. “And that system was now
making my son a victim too.”
After learning her mother’s maiden and married names on various
documents, Barbieri could still not locate the whereabouts of her
mother or ascertain if she was even still alive.

“When Social Security doesn’t know what happened to you, you pretty
much fell through the cracks or are living in Australia,” she said
with a laugh.
But the undisclosed tales Barbieri uncovered were no laughing matter.

She was abandoned as an infant and separated from her twin sister for
nearly the first year of her life, and that was not the only secret
Barbieri discovered during her search. She found out the hard way that
she is one of seven “confirmed” siblings from three different fathers
and, that in addition there was potentially, another set of twin
siblings.

Learning about her birth mother through accounts that included arrest
records, police reports, mug shots and newspaper clippings detailing
child neglect, Barbieri learned about her mother’s affliction with
alcoholism and was told by her mother’s friend — found on a marriage
certificate, still residing at the same named address — that her
mother had committed suicide 12 years prior to Barbieri’s search.
“I felt like my heart dropped to my feet … it was stunning,” she said.
“At this point I had gotten to know her through her paper trail. I
wanted to meet her, but the chip was gone.”

Judy Foster has helped Barbieri’s mission through NJCARE — a
grassroots organization that supports honesty in adoption through
educational outreach and legislative advocacy. Foster is the state
representative to the American Adoptive Congress (AAC) and is a birth
mother who remained silent for 37 years, fighting diligently for
adoptees to be able to gain access to their original, not amended,
birth certificates.

“I am an advocate because I believe this is a civil rights issue,” she
said. “Adoptees deserve the rights to their heritage and updated
medical information.”

After three successful heart surgeries, Jonathon Barbieri is now
healthy and living in Lyndhurst. He received his most successful
surgery two years after his mother’s search began when the procedure
was better studied than it had been at the condition’s onset.

Ironically, Wolff-Parkinson- White Syndrome research now shows the
reverse findings are true: heredity cases have a higher risk for
sudden death.
After her son’s ordeal, Barbieri learned a second cousin died suddenly
of a heart condition the doctors believe was Wolff-Parkinson- White
Syndrome. About the advocacy towards amending the New Jersey state
law, Barbieri said, “Many people believe that it’s just birth families
being able to help adoptees — it’s not. Adoptees and their children
have the ability to help birth families too. It’s a two-way street.”

In addition to writing her catharsis in song, Barbieri is in the
process of telling her long and arduous truth in a book currently
titled, “Adopted and Clueless” and will be giving her presentation on
April 26 at the 30th Annual National Adoption Conference in Cleveland,
Ohio.

Petitioning the state legislature each month by telling her story in
Trenton, Barbieri hopes her presentations will move other adoptees to
assist in getting Bill A752 passed in the Assembly.

Acknowledging the rights of both adoptive and birth parents, Barbieri
questions the rights of adoptees and said, “We were too young to voice
our opinions and desires at the time of our surrender, so our
decisions were made for us. The passing of this bill would give rights
not only to adoptees, but to their children, also.”

For more information about Bill A752 or to find out how you can
petition the state legislature, visit www.nj-care.org.