Most of us take it for granted: knowing which medical conditions run in the family. However, for many adult adoptees, that health history is a blank. Adoption documents with scanty summaries of “non-identifying” information often bring more questions than answers. Here, adoptees describe why they searched for birth family members and what they learned about their health:
Crucial Reunion
Brain aneurysms — catastrophic if they rupture — run in Cathy Heslin’s family. But as an adoptee, Heslin would never have known had she not reconnected with her birth mother.
Heslin, 44, an administrator at Portland State University, in Oregon, reunited with her birth mother, Kate Power, when she turned 18. In the course of their ongoing relationship, Heslin learned Power and two sisters — Heslin’s biological aunts — had brain aneurysms.
When the first sister was diagnosed, the doctor recommended brain scans for her siblings. In 1998, Power underwent surgery to repair a carotid aneurysm. Her sisters had neurosurgery, too. Armed with this knowledge, Heslin had an MRI, which fortunately was negative. She’ll schedule periodic follow-up tests.
“Had I not been in reunion, I wouldn’t have known that I had to have an MRI to screen for aneurysm,” Heslin notes. “In my case, having my medical history when I turned 18 would have been insufficient.”
Slim Documents
There’s no substitute for an adoptee getting direct heath history from family members, says Betsie Norris, executive director and founder of Adoption Network Cleveland. As a young adult, Norris wanted to learn more about her biological background. “My non-identifying information from the agency was one typed page,” she recalls. “The last line said, ‘There’s no medical history of any significance on either side of the family.'”
Skeptical, Norris undertook a do-it-yourself search, and at 26, she found her birth parents. Her mother, she learned, was treated for malignant melanoma five years before their reunion. “I had red hair and blue eyes and freckles, and that was life-changing for me to know that was in my history,” Norris says. Non-identifying information provided by adoption agencies can be helpful, she says. But that only represents a single point in time.
‘What Record?’
Some adoptees never see any documents whatsoever. “It’s a running joke in the adoptive community,” says Lynn Grubb, 49, author of “The Adoptee Survival Guide.” “‘Oh, those records burned up in a fire.’ So a lot of us were told — floods, fires, explosions — all sorts of things.”
“My medical records don’t exist,” says Grubb, 49, who runs the No Apologies for Being Me website. “A judge granted me permission to have them. But the adoption agency said all my record was, ‘Everybody was healthy as could be ascertained from the file.'”
Frustration
Linsey Furry, 63, a retired musician-turned-music educator in Portage, Michigan, has the gift of perfect pitch and is curious to know where it came from. More significantly, she wants to know about her medical history. But Furry, who was born in the era of closed adoptions, has gone through decades of largely fruitless effort.
Her adoptive parents shared the little information they had. But the yearning to know more bubbled up at certain points — such as when her son and daughter were born, and when she was diagnosed with kidney cancer in 2000. “It just became more a thing of, this information isn’t just for me,” Furry says. “This is for my children. Because they were my biological children, there’s a black hole for them as well.” Her search saga includes inquiries into the Indiana Adoption Medical History Registry, a frustrating relationship with a court-appointed intermediary, hundreds of dollars spent and “lots of attorneys’ meetings and lots of stress,” she says.
Furry knows she was a full-term baby with a young birth father. She knows her birth mother’s and her own birth name. A “super vague” document asserts there is no known history of insanity, epilepsy, “feeblemindedness” or tuberculosis. “Nothing that you’d want to know for your life, like heart disease or cancer or diabetes,” she says.
She has also met with genealogists to trace a path from her birth mother’s identity to her medical history, with no luck to date. “Where I am now, at my age, I’m just kind of thinking, this isn’t going to happen,” Furry says. “I’m never going to know.”
Need to Know
For Steve Kelly, 39, the fire chief in Clermont County, Ohio, medical necessity spurred him to seek his birth parents.
When Kelly and his wife began building their family, their first daughter was stillborn at 21 weeks due to a genetic condition. Their second daughter, now 6, began having seizures as an infant. In both cases, Kelly and his wife consulted with a genetic counselor.
When Kelly’s turn came to talk through his family medical history, there wasn’t much he could say. On the intake form, the counselor “literally drew a box underneath me and drew a giant question mark in it,” he says. “And that was heartbreaking, because I felt like I didn’t bring anything to the table.”
Kelly was spurred to action, described in an extensive March 6 article in the Dayton Daily News. After being rebuffed twice by judges in requests to unseal his birth records, and testifying before an Ohio Senate committee on behalf of an ultimately successful bill to open birth certificates statewide, Kelly met his biological parents.
“I found out there’s no true genetic condition that exists that we’re aware of right now, on either side of my birth parents’ families, that would predispose us to what we’ve gone through,” Kelly says. The ability to rule that out was a huge relief to the couple, now also parents to a healthy 7-month-old son.
Mental Health Questions
Adoptees say not knowing their family medical history makes it harder to get a correct diagnosis for conditions such as bipolar disorder, autism, anxiety and depression.
In a 2013 National Institutes of Health-funded study, adoptees had nearly four times the risk of a reported suicide attempt as non-adoptees. Heslin’s also-adopted brother died by suicide at 30, after a “very troubled life,” she says. She believes having information about his maternal and birth history would have helped their adoptive parents get him into the right treatment.
Family Doctor Weighs Family History
When it comes to figuring out medical risk, family history is just one piece of the puzzle, says Dr. Robert Wergin, a family physician in Milford, Nebraska, and board chair of the American Academy of Family Physicians.
The importance of genetics rises in certain circumstances, Wergin notes. Patients who need a stem cell or organ transplant have better odds of finding a good match among biologically linked relatives. Or if a woman’s mother or sister has breast cancer related to the BRCA1 or BRCA2 gene, her own risk rises sharply.
That said, when patients come to Wergin with limited family history information, he can work around it. “I don’t dwell on it,” he says. “‘So that’s alright — let’s move on to the next thing,'” he’ll say. “‘Let’s find out about your habits.'”
Search Savvy
Jake Teschler, 47, an information technology professional, facilitates searches through Reunite of Ohio, the nonprofit organization that helped him with his own search as an adoptee.
While his state’s recent opening of birth records has been a game changer, he says, past searches involved a process of elimination with adoptees ideally making in-person visits, starting with the state’s bureau of vital statistics to check the birth index. Here are some tips from search veterans.
— Check if your state has open adoption records, and if so, apply for that information. The American Adoption Congress details adoption legislation by state.
— You can piece together public records such as birth indexes and daily legal news publications from around the date of your birth. Much of this information is available online, Norris says.
— Check online for volunteer “search angels” in your area. “Each state has people who, for them, this is their passion,” Teschler says.
— Think long and hard before paying a lawyer or private investigator for help, Teschler warns. Often, he says, hired hands themselves turn to volunteers for assistance, then charge adoptees thousands of dollars for the information.
— “One of the misconceptions I hear more and more often is that adoptees can just get genetic testing and get enough health history and find out what types of things they might be most susceptible to,” Norris says. “That’s totally not true.”
— For some adoptees, voluntary DNA ancestry databases can provide an alternate route to connecting with their birth family. You could match up with a participating first or second cousin who has plenty to tell.
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When Adoptees Uncover Their Medical History originally appeared on usnews.com
