Would updated medical information have saved my daughter's life?

This is how the sealed-records law in New York state deals with "updated" medical information, continuing the series we had earlier on the importance of medical histories in previous posts this month.

By the time my relinquished daughter was around eleven or twelve news of the adverse side effects of DES (diethylstilbestrol), a hormone given to women to prevent miscarriages, were making headlines. And although I had not taken DES, I had taken birth control pills after a pregnancy test was negative--when I was indeed pregnant. Consequently, I took birth control pills for the next four and a half months, spotted menstrual blood and called that proof I was not pregnant, clinging to the youthful delusion that I was not with child. (Though I suspected I was, but as as a single woman in 1965, I soooo wanted to believe that I was not having a baby.)

Now it's several years later, I've become a health writer, and because I looked into it, I know that the birth control pills from the mid-Sixties when I was pregnant were several times stronger than what they would later be. And just like DES, they are hormones, and I was taking them in the first trimester, when drugs can have a severe reaction in the developing fetus. My first thought was: What if my daughter is having problems caused by the birth control pills I took? Her parents need to know pronto! What if...she needs to be checked by a doctor, what if...I wrote to the agency immediately, and told them my concerns. And I also thought it would be a way of letting my daughter's family--and quite possibly, my daughter herself--know that I still thought about her. And then, I waited. For weeks.

This was actually the second time I had written to the agency; the first time was just a letter when she was around five asking if someone could let me know...how she was doing. I felt as if somehow she had been contacting me, urging me to get in touch with the agency. I could not put the thought out of my head that my daughter needed me. Somehow, she needed me. I could just feel it.

No, the social worker who wrote back could not tell me anything about her, she said in a letter, adding that she was fine and "happy with her new family." I no longer have the letters--I gave them to my daughter--but I remember those words as if I could read them again today. Fine and happy with her new family. Words that both cut like a stab to the heart--that she had a new family-- and yet a blessed relief--that she was not languishing or had been returned as defective goods.

Eventually a letter came back to my second letter about the birth control pills repeating that she was fine and settled with her family and wishing me well with my life. (I read: Thanks, but no thanks, and here's some advice: Get on with your life. Stop thinking about her, and stop writing to us, we can't help you.) The letter was much more definite about me moving on.

Unbeknown to me, my daughter's physician, who was treating her for epilepsy, had written to the agency, Northaven Terrace in Rochester, New York, around the same time I had written the first letter. That letter, I would later learn, went unanswered. Nada. Her epilepsy came with both grand mal and petit mal seizures. They were severe, frequent, and their after effects, emotionally devastating. To prevent injuries when she fell over, she was wearing a hockey helmet to school. Yet I only heard she was happy and fine with her new family. Her doctor had wanted more information about me, but given the state of New York's sealed records law, the agency did nothing.

But when I wrote the second time, and again received the pat answer that she was fine, someone did write the family and tell them about the birth control pills. Jane's other mother said when they got that letter--six or seven years after they had written the first time--she thought: Where were you when we needed you? Why is this letter coming so many years later?

This story does not have a happy ending, as regular readers know. All her life my daughter had to take strong drugs to control her seizures, and even then, she was still prone to the short, absence (the new name for petit mal) seizures. After we were reunited in 1981, research on epilepsy finds that birth control pills leech Vitamin B6 (pyridoxine) out of the body, and another study found that a lack of B6 may lead to epilepsy, and that some epileptics are helped by the vitamin:

Once in a great while, seizures in newborns and infants are caused by a deficiency of vitamin B6 (pyridoxine). It is important to recognize the deficiency because it is a very treatable cause of seizures. The diagnosis can be established by seeing whether the seizures improve when vitamin B6 is given by mouth, or by recording the EEG while injecting vitamin B6. An improvement in the EEG patterns indicates a vitamin B6 deficiency.

Elsewhere on the net I read:

For some, the answer just might and probably is in vitamins. In all accounts, epilepsy is the same as convulsions, which can be caused by a lack of Vitamin B6 and Magnesium. It was documented that children were given one teaspoon of Epsom Salts in juice for breakfast along with 25mg of Vitamin B6 with each meal. In one week, the medications were ceased. None of the patients had another seizure.

What do I think? Of course, I knew. The birth control pills I took caused her epilepsy. By the time we met, when she was fifteen, she was well into treatment with Depakane, and later, Depakote, both strong drugs that were later found to have a connection to suicide. She never did try the B6 therapy.

I found my daughter in 1981, nearly three decades ago; but this is how the sealed records law from 1935 still works in New York State. The law is as broken and defective as our current health care system, and yet the records are still by and large sealed in 42 states. This is an outrage of justice. I can only find hope in these words by Martin Luther King: “The moral arc of justice is long, but it bends towards justice.”

I grant that I knowingly and solely am responsible for relinquishing my daughter in 1966. Other than the pressures of the times against a single woman keeping her child, I was not coerced into giving her up. I did it, yes I did, and I take full responsbility for that. Yet considering the totally devastating effects that my daughter's relinquishment had on my mental state over the course of my lifetime and continuing today, more than four decades later, considering how the medical information her doctor should have been privy to at the time of her first seizure and how that might have changed the course of her life, I am not a fan of adoption as it was practiced when I relinquished my daughter, and it remains today.