The Hidden Health Cost of Closed Adoption: What Breast Cancer Awareness Can Teach Us About Medical Access
At Rewriting Adoption, we share stories that show how sealed records put adoptees at risk and shape our lives. Without access to family medical history, doctors and adopted people are left guessing — and vulnerable.
“I remember the sinking feeling when my father said, ‘You need to tell your doctors.’”
After she did, access to her own history transformed the care she received — and may have saved her life.
What My Father’s Diagnosis Meant for Me
I should have been at my biological father’s side when he woke up from his mastectomy.
I should have driven him to chemo and been there to help him adjust to life with a lymphedema sleeve. I should have been present to comfort him when his sister died of breast cancer when she was only 27.
You should have seen the look on my doctor’s face when I told her THAT family history.
I was born on a California naval base in the late ‘70s, placed in foster care after my bio mom was assured I wouldn’t be, and adopted at 5 months. I made contact with my bio dad when I was 35. I learned that he had been ghosted by my bio mom and social services, despite the fact that he was serving our government as a highly skilled military officer.
A Family I Should Have Known
My father’s family included military, medical, musical, and education professionals. He served his country for 20 years while raising 3 sons. They were eventually joined by his lovely wife and her two daughters. All of these wonderful people welcomed me (by phone and computer, as our health issues have precluded cross-country visits). My father’s family were not given the opportunity to raise me or even keep in touch with a single letter, photograph, phone call or visit. Generations of ancestral history and genetic traits were erased with a few typewriter keystrokes.
A recent conversation with my parents’ adoption lawyer revealed that my adoption circumvented the law as my father was never given the option to claim paternity. He said, “The adoption can’t proceed unless the father relinquishes rights or fails to respond.” It proceeded anyway.
How I Learned My Family History
In our first joyful telephone conversation, my dad disclosed our family medical history. When I told my doctor about his breast cancer diagnosis and his young sister’s death, she immediately arranged for genetic counseling at the university breast cancer clinic. I had a blood test for BRCA gene mutations, started mammograms at age 35, and began discussing a preventative mastectomy. My doctor requested my dad undergo testing as well. Although we tested negative for BRCA mutations, my medical team agrees that there might be some unidentified genetic factor that causes cancer in his family. My maternal grandmother also had breast cancer in her 50s, so I am considered high risk.
The only reason I know any of this is because my bio mom’s second daughter (born 18 months after me) hired a PI to find me. My half-sister connected me with our mom who provided my dad’s name. When we made contact, he said he’d always hoped I’d find him. He tried to find me once he was finally told I existed, but it was too late. I was someone else’s daughter by then.
The Dangerous Cost of Closed Adoption
Though there are many, we only need one argument against closed adoption: lack of access to medical history is dangerous for adoptees. A child is only a child for a fraction of its life, then has to live the remaining 3/4 (if lucky) as an adult. Since disease typically strikes in adulthood, it’s important to know our biological relatives’ developing medical history over their lifespans.
Summer 2023 at age 45, I had a suspicious finding on my routine mammogram. It was the third time that I’ve had to go for a diagnostic mammogram and ultrasound. Usually, the second set of tests clears me, but this time they were still concerned. I had a fine needle aspiration, then a core needle biopsy. Titanium clips were placed to highlight the sites on future mammograms. At every appointment, the clinicians repeated the phrase “high risk family history.”
The Difference Family History Makes
A kind nurse noticed my catastrophizing tears falling on the pillow as the doctor applied pressure to the bleeding biopsy site. I was thinking, “I still haven’t met my dad in person”. She squeezed my arm and said firmly but warmly, “You’re going to be ok”. If you could only understand the increase in care and compassion I’ve received now that my “high risk” is known. Fortunately, the cysts didn’t require intervention. My doctors now bypass the usual screening mammogram and order a yearly diagnostic mammogram for me at the breast cancer center. This saves time waiting for additional appointments and reduces my exposure to radiation. Knowing my family history makes a difference in doctors' perception of my risk and their decisions about my care.
Monitoring, Prevention, and Hope
I had another suspicious cyst and biopsy last year. Just like the previous year, the phrase “high risk family history” was repeated at every step of the diagnostics. I have 3 biopsy clips monitoring suspicious sites. My doctors take my symptoms more seriously since learning my family history. Their increased attention has led to a diagnosis of Sjogren’s Disease which puts me at risk for lymphoma, so I am being monitored for that as well. My clinicians bring up preventative mastectomy with every mammogram, but we’d like to improve my autoimmune symptoms before surgery.
Last summer, my dad sent me a breast cancer awareness calendar featuring 11 women and himself. He speaks at fundraising events where he is approached by other male survivors who thank him for raising awareness for a disease that’s generally viewed as a women’s health issue. I admire his efforts, and only wish I’d been allowed to help him and his family through their health struggles as I did for my adoptive family whose medical history has no bearing on mine.
From Awareness to Action: Listen to Adoptees
The ‘Make Adoption Great Again’ movement threatens to eclipse adoptee voices while adopters monetize children on social media. As more Incidents of violence against adoptees come to light, it is vital that the public and legislators listen to adult adoptees. Only we can convey our experiences and the physical and psychological hazards we may face being cut off from biological relatives.
I’m sharing my experience to raise awareness about the harmful practice of erasing adoptees’ family history just so adoptive parents can pretend to have a blank slate child. The child might not end up being the healthy person that adoptive parents pray for, and denying access to biological family medical history may set an adult adoptee up for a life-threatening medical shock.
Help Open Records for California Adoptees
Though California is typically viewed as a progressive state, it is still among those that restrict adoptee access to original birth certificates. Please help California adoptees access their original birth certificates and bring them closer to knowing their family medical history and truth of their circumstances. This petition has been started by my hometown’s celebrated music teacher, fellow adoptee Paul Kimball.
Additional Resources
Contribute to breast cancer research and patient support:
Paul Kimball’s book:
