The crisis that accompanies the illness necessitating a BMT, may gain an added dimension due to complex issues that underlie a child’s placement for adoption or foster care. Of course, every family and situation is different, but it is not uncommon for adoption issues to take on special significance at key times one’s lifecycle, and an illness whose cure is linked to genetics may be one of these. How the family has communicated among themselves about adoption prior to their child’s illness is important. The crisis of illness may also offer added positive “teachable moments” for parents to discuss biology, genetics, family relationships, and their child’s own life story in any age-appropriate way.
The secrecy and stigma that surrounded adoption in the past, and today’s families are better educated about adoption being a lifelong matter than ever before. However, along with the customary questions that all mixed heritage families may receive about their authenticity from the public, personal and political beliefs about adoption may exist among those with little direct experience. Misinformation and bias, often reinforced by the popular media, can contribute to negative attitudes about adoption that remain common.
Like anyone else, healthcare professionals may sometimes share personal views in the form of insensitive comments, and medical facilities may use rigid health history reporting forms or request patient genetic history information in less than thoughtful ways. The crisis of illness may also offer added positive “teachable moments” for parents to discuss biology, genetics, family relationships, and their child’s own life story in any age-appropriate way.
Patients who have joined their families through adoption may often be among those for whom it is also more difficult to identify an unrelated donor. This is because in the US, children who are in need of new families are disproportionately members of racial/ethnic minority groups. In addition, internationally adopted children often come from regions of the world whose genetic-origin populations are seriously under-represented in world donor registries, and are often also minorities in the US. Parents should discuss early with their child’s oncologist the need to start an unrelated donor search while a search for biological relatives may be going on simultaneously.
We offer here specific information for foster and adoptive patient families, along with a resource list relevant to both domestic and international placements. Education about adoption issues for healthcare professionals is also included in the for providers section.