My adopted daughter needs her family medical history (column)
Nann Halliwell 2:11 p.m. EDT June 1, 2016
Carolyn has no right to her own medical history.
My daughter was born at 3:30 p.m. on Oct. 17, 1992 at Carlisle Hospital. Her birth name was Maggey Suzanne. She weighed 7 pounds, 14 ounces. When Carolyn, the name we gave her when we adopted her, was 16, she found a lump in her right breast. When the doctors asked us if there was any family history of breast cancer in the family, we could only give them the facts listed above.
Like many, many adoptees she has no family medical history.
We contacted a mediator and asked her to find our daughter’s birthparents. We gave her the scant information we had. By the end of the day, the mediator had located the birth mother and the birth father's mother. The birth father had died several years before. The paternal birth grandmother was very generous and gave us all the information we needed and more. She and Carolyn developed a very lovely relationship, and she has gotten to know her birth father through his family.
Her birth mother refused. The birthmother has a son, just over a year older than my daughter, and two daughters younger than my daughter that she has parented. They have medical histories. She flat-out refused to provide any medical history to my daughter although it was explained that the child had a potentially serious medical condition that could be genetic in nature.
And the kicker is Carolyn has no right to her own medical history. Other than begging, which we have done several times through the mediator, we can do nothing to compel the birthmother to provide the simplest of medical histories.
Years ago we registered Carolyn’s information with the Pennsylvania Adoption Information Registry (http://www.adoptpakids.org/PaeAmhr.aspx) whose mission is to help “adoptees, adoptive parents, and birth relatives who would like to share or obtain medical or social history about themselves or their birth relatives.” This system only works if both parties, birth parent and adoptee register. Needless to say, Carolyn’s birthmother has not registered, although the mediator did provide her with information about the service.
As Carolyn has matured we have encountered more medical problems that having a full medical history would have been very helpful with. Her birth father's family is always willing to fill in any gaps as they can. When the birth mother refused to respond, we tried appealing to her parents, my daughter’s maternal birth grandparents. They never responded. Think about that for a moment. The woman who gave birth to her, and her grandparents will not lift a finger or fill out a form to help in a medical crisis. Can you imagine how that made Carolyn feel?
When Carolyn was around 10 years old, she began to have some issues. I did not know if they were normal puberty issues, adoptions issues or transracial adoption issues. It took almost five years and so much suffering on Carolyn’s part to discover she is bipolar and has major depression. Someone who knew the birth mother told us that she also had mental illness issues in high school. If I had known that was in my Carolyn’s family history, I would have gotten the right help for her much sooner. Instead she suffered, suffered to the point of suicidation ideation, because we did not have the information we needed.
Carolyn is now 23 years old. Her need for a medical history has not changed. She does not know whether she carries a particular genetic disease or is at risk for any particular issues. She knows her paternal grandfather was diabetic, but what about her maternal side? There are conditions and diseases that develop later in life. Are there any that she should be aware of? We simply do not know.
We are one family among many who have had to deal with this issue. The children are the ones who suffer. The solution is to require a full medical history provided by the birthparents primary care physicians to be prepared for each adopted child. It would be given to the adoptive parents with the birth parents’ names redacted. It protects their anonymity. The physician involvement insures the information is correct and complete.
I asked Carolyn how she feels about the lack of a medical history. She answered, “I would say this issue has and continues to affect me in a very negative way. If I could say anything to my birth mother, I would say how dare you do this to me because you had no understanding of responsibility and consequences of your actions. I would ask legislators to help us. I live my life in fear for many reasons, and lack of a medical history is the main reason. Not only do I not know who I am, but I have no clue what I could become in my future.”
This column first appear in The York Daily Record