Because Huntington’s disease is inherited, its sudden appearance can send family relationships into a state of shock.
Many HD families can trace the disease back over generations, but in some, like mine, it appears unexpectedly.
Adoption of gene-carrying children generates another kind of surprise for both the unknowing adoptive parents and the adoptee.
The story of four HD-stricken daughters born to Dianne M. Travers, who died of HD in 2010, reveals the almost surreal perils of adoption when HD is involved. Their story also highlights how genetic testing, increasingly common in the biotechnological era, can open up unexpected and disturbing doors.
Figuring out a puzzle
The story of these women came to light because one of the sisters, an adopted child who is today the 47-year-old Lisa Davenport Boudreau, in March 2012 discovered the identity of her birth mother after an 18-year search.
An Army combat veteran, Lisa commenced her search at the age of 30 in 1995 after retiring from the service on disability resulting from post-traumatic stress disorder.
“It was like a puzzle, putting a little piece together at a time,” Lisa told me in a series of recent interviews from her home in Wilmington, NC. She and her sisters were willing to share their both exhilarating and painful story in an effort to raise consciousness about both the tragedy of HD and the challenges of adoption.
Lisa’s adoptive parents had told her that they raised her in a closed adoption, which withholds the identity of the birth parents. Knowing her parents would be reluctant to help, Lisa at first proceeded on her own, without knowing the name of the agency that had handled her adoption.
Acting like an investigative reporter, she sought her roots by compiling a list of women who’d gotten pregnant around the time of her birth in 1965 in Fargo, ND. She also looked for Fargo babies born that year and poured over census reports and microfiche of area newspapers, hoping somehow to find a scrap of news about her entrance into the world.
In 2007, with her four children from two previous marriages old enough to allow her more free time, Lisa devoted herself to the task full time. She first contracted a private investigative firm specializing in assistance to adoptees. Despite paying a $2,000 fee, she got no results.
Lisa was finally able to obtain from her adoptive mother the name of the agency that had handled her case, Catholic Charities of North Dakota, to which Lisa paid $500 in fees for a document certifying her nationality and birth weight and for the agency to begin a search for her birth mother. This crucial step allowed Lisa to intensify her search.
As Lisa explained, since the 1960s adoption laws have changed to make it easier for adopted children to find their biological parents. “A lot of adoptees want answers,” she said.
However, Catholic Charities delayed in obtaining results, Lisa said.
“I had to have someone put a fire under (their social worker), because in three years they did absolutely nothing,” she explained. “And then, all of a sudden, when I told them I would sue them, in a month they found my mother. I really think Catholic Charities is using the adoption industry to make money.”
Catholic Charities told her Lisa that she had no siblings. To this day, she has still not obtained a copy of her birth certificate, which remains sealed in an archive in Fargo.