Medical Issues
of
Adoption
Has Medical Information Disclosure Really Changed for Adoptees?
It is estimated that half the United States population has an adoption in their immediate families. Consider that, for the past seven (7) decades, sealed adoptions have in most cases neglected to disclose, or purposely prevented disclosing, pre-adoption or post-adoption, accurate, updated adoptee/parent medical histories regarding over 4,500 genetically transmissable diseases/conditions... and AIDS.
Over the past several decades, articles, lawsuits, petitions and legislative lobbying efforts with regard to opening adoption records and/or to adoptees and their adopters with the adoptees' current (updated) "birth" family medical history (or to communicate the adoptees' need of a matching bone marrow or organ donor, for instance) seem to be dealing with "old adoptions" and yet, even today, there is no uniformity with regard to disclosure or access to medical information in the adopted child's best interests, for either domestic or international adoptions.
Generally, children cleared for inter-country adoption have been tested and also received immunizations against common childhood ailments while under care and custody of child caring/child placing agencies (orphanages/institutions for children). But children of private adoptions in the U.S. or abroad --via lawyers, facilitators such as physicians and non-licensed individuals (baby brokers) -- are at risk for undisclosed illnesses. Children bound for inter-country adoption placement undergo visa medical examination or health examination prior to issuance of their entry visa if this is a requirement of the receiving country. To date, when required, visa medical examinations include: blood tests, stool examination, urine test, skin test for allergies, Tuberculin test for Primary Complex or Pulmonary Tuberculosis, Hepatitis (if requested) and HIV. Filipino children are not subjected to AIDS tests unless there are factors (e.g. child's "birth" mother is a prostituted woman with multiple partners, drug user, etc) An adoptee's future health and welfareis still a crap shoot in many ways. The following (1995) article on HIV secrecy in adoption still holds true for many adoptees of past and present adoptions.
Disclosures of an Adoptee's HIV Status:
A Return to Orphanages and Leper Colonies?
Byline: Charles Chejfec,
John Marshall Journal of Computer & Information Law, Vol. XIII, Winter 1995, No. 2
(a publication of the Center for Information Technology and Privacy Law of the John Marshal School of Law, 315 S. Plymouth Court, Chicago, Law 60604; (312) 427-2737;
http://www.jcil.org/journal/articles/339.html
During the next decade, at least 125,000 children will become orphans of the AIDS epidemic and will need to be cared for by family members, caring adults or extended family members, or be placed in foster care. The movement toward greater disclosure of an adoptee's medical history reveals an almost complete failure to address the HIV/AIDS epidemic in this area. The adoption process does not provide a specific time when an adoptee's medical conditions are to be disclosed to adopting parents.
Although the adoption process did not always serve the child's best interest, today disclosure decisions pertaining to adoption are made in accordance with the "child's best interests" standard. Initially, disclosure of HIV/AIDS does not appear to fit neatly into the current standard of acting in a child's best interests. However, the author's proposed statute brings elements of fairness and equity to the adoption process when HIV/AIDS does become a factor.
The fear of failing to place children in homes forms the backbone of arguments offered by the proponents of nondisclosure. For example, disclosing a medical history may result in stigmatization and render a child "unadoptable." On the other hand, disclosure advocates claim that withholding background information could physically or mentally harm the adoptee. They further argue that broad disclosure permits pre-emptive treatment of a medical condition and prevents the financial and emotional devastation to the adoptive parents and adoptee when undisclosed circumstances cause an adoption to go awry.
The majority of states that have amended their adoption statutes to permit greater disclosure did so prior to the advent of HIV/AIDS. In addition, the common law decisions involving adoption agency malpractice were drafted before the full extent of HIV/AIDS was understood. The primary deficiency in the adoption statutes is their silence on HIV/AIDS disclosure.
Most AIDS confidentiality laws implicitly recognize the rights of prospective parents to discover the HIV status of an adoptee pursuant to a court order. Thus, if an order is granted by a showing of good cause, then the AIDS Confidentiality Act, a vehicle originally created to protect HIV test results, would become the very means of disclosing them. The comment proposes elimination of the possibility of a court order to disclose a newborn's status and believes that it would shield adoptees from unfair stigmas associated with HIV tests.
The common law cause of action for adoption agency malpractice injects elements into the HIV/AIDS equation that raise critical concerns about the substantive law and its pragmatic effects. First, the common law is too broad and does not focus on HIV/AIDS. Second, the law does not address the crucial timing of HIV/AIDS disclosure. Third, the law perpetuates litigation and results in adoption law moving away from statute, its originally intended regulator.
The need for a distinct, comprehensive HIV/AIDS adoption policy arises from the conflict among statutes governing adoption, the common law and AIDS confidentiality laws. The comment's proposed statute would make it mandatory to have all babies designated for adoption to be tested immediately or reasonably soon after birth, and then once more after his or her eighteenth month. Thus, the follow up exam keeps prospective parents from adopting a child under false pretenses.
ADOPTEE DEATHS FROM MEDICAL ISSUES
excerpted from
Chosen Children by Lori Carangelo
(See also
Adopters Who Abuse & Kill
)
October 1981: Newsweek reported the plight of James Grant George, an adult adoptee when Kansas City, Missouri Judge Gene Martin said no to his request to open his court file in order to discover his parents;' identities. George had leukemia and needed a bone marrow transplant from a blood relative to save his life. The judge ruled "Although the circumstances were dire and heart rending, they were not compelling enough to open the adoption records." George's comment to media: "If I were a convicted murderer, the governor could give me a pardon. Obviously, the 'crime of illegitimacy' is not pardonable in the state of Missouri."
April 12, 1987: The New Haven Register (CT) in "Mom Hunts for the Son She Gave Up," this author asked Judge Glenn E. Knierim, Connecticut's probate court administrator, to give her son's adopters her updated medical information regarding her condition and allergies to at least 10 cardiac medications. Knierim told her that, under state law, he had no authority to take such action. My son was then of legal age to receive such information directly, but Connecticut did not then, and does not now, permit unsolicited provision of medical updates or contact from parent to adoptee or to adopters. When I found my son, by paying a search underground $2100, he had begun searching for me but could not afford court costs. I learned that he had been deaf at birth, a diagnosis overlooked by my physicians and The Children's Center in their eagerness to obtain my signed relinquishment for adoption through their deceit. Neither was his deafness disclosed to his adopters who, upon discovering his condition, provided the surgery that cured him, but were afraid to tell The Children's Center lest the agency render him "unadoptable" prior to finalizing the adoption.
May 4, 1989: The Desert Sun (Palm Springs, CA) story on an adoptee dying of AIDS highlights the misplaced priorities of "family secrets" over adoptees' life-and-death issues. He said his adopters encouraged secrecy by cloaking family problems and that "Keeping secrets has been a way of life for me." When he informed his adopters he had AIDS and wanted to locate his mother before it was too late, his male adopter declared he "had no son." That's when Brian Wilkins decided to become Hawk Ramsay. "Ramsay" is the name of his mother who gave him up for adoption when he was an infant and "Hawk" reflects his Cherokee and Choctaw roots as well as the Navy nickname he earned while serving on the U.S.S. Kitty Hawk. Brian found his mother who was supportive of her son until the end.
January 24, 1992: Associated Press (and November 1992 Blood and Marrow Transplant Newsletter): Jonathan McGowan, of Norwell, MA, an adoptee with leukemia, was reunited with his biological mother in December 1991 at the Markey Cancer Center at the University of Kentucky; she had not seen him since McGowan was 5 when she put him up for adoption in South Korea. Sandra McGowan, Jonathan's adoptive mother, said that after an international search failed to turn up a suitable bone marrow donor for him, his mother was located and answered the call to save her son. The unidentified woman flew from South Korea to provide her son with her matching bone marrow which was transplanted on January 24, 1992.
July 15, 1996: TIME International, in "Korea Saves a Son," at age 21, Brian Bauman, born Kim Sung Duk in South Korea in 1974, and who had been adopted at age 3 by Steve and Elaine Bauman of Minnesota, was diagnosed with chronic myelogenous leukemia, an insidious form of the disease. He was told he would die within five years if he didn't receive a bone-marrow transplant. To save Brian's life, he needed to search for his family. To many Koreans, adoption of any kind is considered shameful; Korean families who gave up children to met the increasing demand by childless American adopters, were careful to hide the fact from neighbors, teachers and the children themselves. During its impoverished post-war period, Korea began sending thousands of children abroad for adoption and that human tide is considered a national disgrace. Brian's story was publicized in 1995 in Korea's major media; the newspaper, Hankook Ilbo, was flooded with letters from Korean parents who had surrendered children in the past. The Korean Broadcasting System conducted its own search with help from the eastern Child Welfare Society which had placed Brian and found his mother, known only as "Mrs. Shin." Mother and son were secretly reunited but neither she nor his 33 year old sibling were a match needed for bon marrow transplantation. An unrelated Korean donor, Suh Han Kook, 23, was found as result of the publicity and over the next few months thousands of Koreans volunteered to place their names on two donor registries.
December, 1996: Terminal Illness Emergency Search (TIES) web-site describes their first case of an adoptee with AIDS named "Grady" who wanted to find his mother before it was too late but the court and agency that held his mother's identity would not oblige. TIES, then coordinated by adoptee Deb Schwartz, rallied volunteers over Internet and in less than 24 hours, Grady was reunited with his mother by phone. Today, TIES has disbanded due to lack of volunteers.
February 6, 1997: On Oregon Department of Human Services web page captioned "Little Known Service United Families," Christine Joachim, reports: "The man's voice on the other end of the phone is weak. He's in his 40's and dying of a genetic disease, but says his concern is not for himself. Adopted at birth, he's trying to locate a half-brother he's never met to deliver a life-saving message: 'You may be genetically at risk for this fatal disease, too, but it can be licked if it's detected early.'"
April 4, 1998: Adoptee Birthfamily Connection post by New York adoptee, Patricia Coleman Ward: "My son has leukemia and it would be helpful to find my brother born in the 1950's, Bronx, New York; his birth name would be Coleman."
August 14, 1998: NBC-TV's Extra aired the story of adult adoptee Michelle Robertson's life and death struggle to get the Monroe County, New York court to open her adoption file in order to discover her parents identities. Roberts has Hodgkin's Disease and requires a bone marrow transplant from a biological relative to save her life. The court denied her request
July 30, 1998: The Albany Democrat-Herald (Salem/AP, 7-30-98) highlighted life-saving reunion of adoptee Barbara Casali-Mingus, 31, who had became a "Gray Market" adoptee in 1967. The encounter was amiable but she discovered her mother was dying of cancer. Her mother admonished her to be checked for the disease. "I told her I had been checked last year. She says that didn't matter, to get checked anyway. I did and I have cervical cancer. I had an operation and recovered. She saved my life.".
September 8, 1998: The Shreveport Times (Louisiana) reported a similar situation with a twist. Shreveport Juvenile Court Judge Gallagher said no to Leonard Hargrove Jobron, a 50-year old adoptee whose daughter had leukemia; Jobron's illnesses precluded him from being a suitable donor for his daughter and the Donor Bank found no match in two years. These cases leave one to wonder exactly what does constitute "good cause" required by statute to open a sealed adoption file.
December 7, 1998: The Wall Street Journal asks "Are Adoption Agencies Liable for Not Telling All?" - "Kristi and Blane Cesnik already had two adopted daughters with severe emotional problems when the set out to adopt more children. They say they made it clear that they couldn't handle another disabled child. But two infant boys they adopted in 1990 and 1991 both turned out to have cerebral palsy and serious developmental disorders. Now the Cesniks are suing the New Beginnings Adoption and Counseling Agency in federal court in Columbus, Georgia. The St. Cloud Minnesota couple claims the agency led them to believe that both infants were healthy, even though they say it had medical records indicating otherwise."
July 17, 1999: Delaware Reunion Registry web-site, captioned "Dying To Know You" contains the story of Anna Bound, an adoptee, wife and mother. Her baby was sickly, his condition undiagnosable. Doctors needed Anna's medical history in order to care for her son. Being an adoptee, she didn't have it. The adoption agency wanted $800 for the information, which she could not afford. A few months later, in December 1996, Anna died unexpectedly from an inherited disorder she didn't know she had. She left behind a grieving husband and child. Anna was 24 years old.
September 13, 1999: CBS Evening News anchor Dan Rather reported that adoptee Curtis Endicott died of a lifelong undiagnosed lung ailment on September 11, 1999 at age 51, while waiting for Oregon's successful Adoptee Rights Initiative (Measure 58) to take effect....Measure 58 (HB 3194) passed by a strong margin in the November 1998 election but was held up by a court injunction. Endicott had been and active campaigner in support of the measure and an active participant in the ensuing lawsuit in which he had been granted intervenor status
January 25, 2000: Post on Internet website for former Willows Maternity Home mothers and adoptees at http://members.tripod.com/~bedgie/thewillows.html: Adoptee Deborah Baker O'Connor, born at Willows Maternity Home 4-17-47, lost her battle with leukemia.
June 20, 2000: Adoptee Birthfamily Connection, an Internet web-site for searching adoptees and parents posted this message: "William Ferguson, born Baby Boy Stephens in Modesto, CA., 2-8-52, to Janet Stephens from Ceres, CA., is searching for a Live Liver Donor. He has already lost his son to leukemia in 1997 at age 10 for lack of matching donor."
August 16, 2000: Adoptee Birthfamily Connection posted a message by Mary Rindahl which echoes that of mothers whose doctors or midwives falsely told them "the baby died." Decades later some of those "dead babies" shows up as adult adoptees searching for their mothers, most having been stolen at birth for black market adoption. Mary writes: "My own child was born 11-25-70 in Wheatridge County at the Lutheran Medical Center. He weighed 8 pounds 14 ounces and his alleged 'body' disappeared from the delivery room as though it never existed. The doctor refuses to take responsibility for my son's disappearance. My son will be 30 years old 11/25/00 and I will never stop searching for him."
December 11, 2000: The Boston Globe in "Second Chances: Adoption's Secret Terminally Ill Woman Seeking Biological Past" reported the double troubles of adoptee Susan Martin. Diagnosed with leukemia, Martin, 34, requested any documents to which she is entitled, from Boston's Department of Social Services. She hoped to use them to locate her blood relatives and made a second potentially life-altering decision--to also search for her own biological son given up for adoption almost 18 years prior. All these agencies would do is place Martin's information in a file until the other party should inquire. Martin stated "I'm not in this just for the bone marrow now, or even mainly for that reason anymore. This is an opportunity for me to have a relationship with the woman who gave me the greatest gift that any person can give another: life.".
February 5, 2001: The Denver Channel, in "Court Date Set for Adoptive Mother of Dead Child; Birth Mother talks To 7 News About Her Daughter" (by Wayne Harrison) details the young adoptee's death as follows: "Jeanne Newmaker is charged with criminally negligent child abuse resulting in death, which carries a maximum sentence of 12 years...Her adopted daughter, Candace, died during a controversial "re-birthing" therapy in Evergreen, Colorado, last year. Candace, who was supposed to work her way out of a blanket to be "reborn" to her adoptive mother during a therapy session, died of asphyxiation a day later. Jeanne Newmaker had brought her daughter to the clinic in Evergreen to treat her for attachment disorder...a two week intensive program that cost $70,000....Candace Newmaker was....with her birth mother until she was adopted by Jeanne at age 5. In her first interview, birth mother Angela Elmore talked about her daughter: "What kept me going all these years she's been gone was the fact that she would find me and I would hold her again," Elmore said. "I will never see her again."
May 23, 2001: The Korean Herald reported in "Citizens Campaign for Bone Marrow Donation for Adoptee, Korean-American," that the Korean Organ Donor Program was campaigning to help a Korean adoptee living in the U.S. and suffering from leukemia
June 2, 2001: D's Search Posts, an Internet web-site for searching adoptees and parents, has the following message posted: "Emergency Search: male adoptee, born 5-27-53, Kansas City, has been diagnosed with leukemia; desperately searching for information."
September, 2001: Ladies Home Journal article, "I Am A Medical Miracle" (by Diane Costanzo, "Health Report,"p. 76) detailed the plight of Melinda Kerner, a 40-year old adoptee and mother of two children, 5 and 9. She has leukemia and her doctor gave her about five years to live. Two years earlier, she discovered she has a biological half-brother and asked him to take a bone marrow compatibility test, as Kerner's best chance for survival was to find a biologically related bone marrow donor. Her half-brother did volunteer to be tested but was not a "match." Kerner then paid the adoption agency that had originally placed her the non-refundable fee they require to do a "search" for her parents and to determine whether she had any full siblings. The agency reported that her parents "declined to release their names to Kerner." Kerner is currently in remission thanks to a new experimental drug but her prognosis cannot be predicted. A bone marrow transplant would have been better. One can only speculate whether both of her parents could be so indifferent to their daughter's life-or-death request --or whether the adoption agency bungled the contact. Private adoption agencies have been known to pocket "search fees"for merely sending a letter to a "last known address" that has been in a dust covered file for decades. Agencies and courts are more concerned with "confidentiality" of its records than with "best interests" of the adoptees they created. In this author's experience with over 12,000 adoptee/parent contacts, I've encountered only four parents-from-hell who refused contact or to share any information. In such cases, the adoptees then went on to locate the other parent with better results. While it's not impossible that both of Kerner's parents are heartless, Kerner was never permitted to ask her parents directly.
December 15, 2001: Holt International's web-site has a special page devoted to an adoptee's medically urgent search at at http://www.holtintl.org/brundage.shtml : Tami Brundage, 27-year old Holt adoptee from Korea was diagnosed with leukemia. Holt's file says she was "abandoned." When Tami was taken in by Holt, it was the practice of Holt-Korea to falsify birth names and declare their wards as "abandoned" even when the mother's names were known. The childrens' health information and ages were often falsified as well to make them more appealing to American adopters. The now-adult adoptees have no "paper trail" leading to their parents and must rely on passive reunion registries..
According to Peggy McKay, former Kansas Social Services Supervisor, "Nothing awful has happened in Kansas," where adult adoptees have always had access to their birth records. Nothing awful happened in Alaska, an "open records" state, nor in Traverse City, Michigan, where "open adoption" is practiced. Yet 47 states withhold birth records from adult adoptees.
May 20, 2002: Elaine Tomasini, an adoptee stricken with leukemia, contacted Americans For Open Records (AmFOR). She requested and received free search assistance toward identifying and locating her biological family. Her search is in progress at this writing. Following is her information for researchers, writers and searchers:
Adoptive Name: Elaine Tomasini
E-mail: BLUEYES4062@aol.com
DOB: 2-3-62
POB: Children's Hospital, Buffalo, NY
Mother's Age at time of the Birth: 22
Adopters: Louis J Tomasini (died 1976) & Inez Tomasini
Attorney: Joe Thomas (currently listed in
Williamsville, NY)
March 9, 2003: Denver Post: "Cancer Patient Finds Kin, Marrow Donor At Once" http://www.denverpost.com/Stories/ 0,1413,36%7E53%7E1230931,00.html?search=filter
by Coleman Cornelius, Denver Post Northern Colorado Bureau BRIGHTON - Ron Hawley was diagnosed with leukemia in 2001... Hawley's aggressive cancer of the bone marrow came back in December after a year-long remission. And the 32-year-old Brighton man got grim news from his cancer specialist: Get a bone-marrow transplant as quickly as possible or face sure death......
He learned Feb. 22 that he has three older brothers in western Oregon who, like him, were given up for adoption in the 1970s by a single mother, a migrant farmworker who could not care for her children. The Oregon brothers were adopted by the same close-knit family and grew up together in that state, while Hawley was born later in Greeley and was adopted by a Fort Lupton couple when he was 9. Hawley discovered from medical tests Wednesday that one newfound brother,Tracy Boeder, 34, is a perfect donor match.
"I was overcome that when Dad asked, they said, 'Sure thing.' They didn't even think about it," he said. "They didn't even say, 'What does a person going through a bone-marrow transplant have to do?"' said Kim Hawley. "They didn't even ask."
It took JoAnne Stanik, a co-founder of Adoption Free Search, less than two hours to make the links between Hawley and his brothers using information the sick man's adoptive father provided, including first names, approximate birth dates and adoption locations for the three lost brothers. This information from Hawley, although sketchy, was more than the Boeder clan had ever been able to unearth. Stanik, of Tucson, said she reached the home of 37-year-old Paul Boeder, the eldest brother, in a single phone call. He also lives near Albany, Ore. "I cried like a baby," Stanik said. "It gives us a good feeling to know we put a family back together."....."Family is very important to me," John Boeder said. "If you don't have a family and family roots to go back to, what's our purpose in life? With Ron, I'm expanding my family."
June 5, 2003: Albuquerque Tribune, "Still Seeking Cure," by Jan Jonas
A 5-year-old Albuquerque girl whose adoptive mother has roamed the world in search of a bone marrow donor must try yet another treatment and another city in an effort to stop the progress of a rare and fatal disease.
This time it will be Washington, D.C., where doctors from the National Institutes of Health want to try an experimental drug to treat Kailee Wells.
...The optimum treatment would be a bone marrow transplant, but none of the 9 million registered donors worldwide have matched.
...[Linda Wells, her adopter] is concentrating on taking care of the little girl she adopted from China about five years ago, trying to keep her child going in the face of multiple needles, men and women in white coats and painful medical procedures.
"She's OK," Wells said, "but it's getting hard."
HELP FOR KAILEE - Donations for Kailee Wells: First State Bank, Routing number 1070001452, Account number 1816616 Information: www.KaileegetWells.com
