Adopted and Staying Healthy: Dealing with an Information Gap

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Nurturing our children’s health is an important parental responsibility. We choose their food with care, ensure that they see the doctor when they’re ill, provide medicines when needed, and encourage activities that contribute to their health and general well-being. We keep accurate records of vaccinations and any diseases and injuries that befall our kids. We understand that good health is one of life’s great blessings and that it takes intention and effort to sustain.

Part of most visits to the doctor includes referring to and/or adding to their health history. One of the well-established challenges with which adoptees must deal is unknown and incomplete medical histories. This gap can have significant—even life-threatening—consequences depending on the extent and the nature of the unknown information. Ideally, we secured as much health history data as possible before our children joined our families. Unless there is an ability and commitment to receive regular updates, the data will become increasingly incomplete over the years because it cannot reflect health events that occur after a child leaves the birth family and joins our own.

Many adult adoptees report they feel very uncomfortable when doctors request a health history. The image of a blank page of health questions with a bold line drawn through it and only two words: unknown, adopted leaves them with two feelings: first, concern (about what they do not know) and, second, shame (like a badge that proclaims “reject.”) Those of us who were within our biological families only know the security of life-long welcome; we do not carry a niggling, personal knowledge of fracture, of separation from one family and engrafting to another.

My daughter is also my writing partner and colleague on many projects. She has discussed this health history topic with me many times. Usually, she speaks of it with humor which I recognize as her coping strategy. Because a mutual friend of ours is quite ill with a rare and complicated disease, many of our recent conversations have focused on health. With her typical wry wit, she recently commented, “Mom, I’m so glad you and Daddy adopted me and… I am soooo glad I am not related to you!” I was not offended. In fact, I reciprocated her good humor and replied, “Me too!” Readers may wonder what facts underlie our sentiments.

Consider a small portion of our family’s health history:

My grandmother died of ALS (Lou Gehrig’s Disease— a fatal degenerative brain disease.)

My sister had Stage Four Lymphoma.

My sister died of Early Onset Alzheimer’s.

My mother died of brain cancer.

My husband died of Lewy Body Dementia.

I had ovarian cancer at age fifteen.

After reviewing these few facts, it is easy to understand why she feels relief that these diseases do not hide in her DNA. On the other hand, it raises her awareness of devastating health issues in a very immediate, personal way. She cannot play the “denial game” and pretend that such terrible things happen only to other folks. She knew and loved most of these people and was inspired by the courage and grace with which they faced their medical challenges. Their illnesses certainly incline her to wonder what health risks linger in her genes. Her efforts to be proactive about her health are based on generalities, not on known fact patterns established by a perspective gathered through the generations.

For the most part, her data is unknown and unknowable. Because she does not know which specific diseases which she is genetically predisposed to develop, she finds herself worrying about every disease. Understandably, this causes her stress. We all know stress is unpleasant: it is also demonstrably unhealthy. This circumstance is unfair; adoptees should be able to access this kind of information about and for themselves.

What can we do to help our kids achieve and sustain lifelong good health? In the spirit of #NationalAdoptionAwarenessMonth, grow your awareness about our children’s biological family’s health information. Make every effort to obtain all information available before placement and then continue to update that information over the years. Help our children fill in their “blanks.” Their health depends on it.

Learn how the coaches at GIFT Family Services can help you and your family navigate your adoption journey. We’ve faced our share of family challenges and crises, ridden the metaphorical rollercoaster, and our families have not only survived; they have thrived. We offer experience, neutrality, and understanding.