Epilepsy, Adoption, Pharmaceuticals: Suicide

Lorraine and daughter in 1982, happier times

National Suicide Prevention Week was earlier this month. Those who know my story know that my daughter committed suicide. This is one of the "Facts and Commentaries" from my recent book, Hole In My Heart: memoir and report from the fault lines of adoption. My hope is that those suffering with any of the maladies listed here, or their friends and families, will see this as a cautionary message, and get help before it is too late. I tried, but could not save, my daughter.--lorraine

A few days after the first anniversary of my daughter’s suicide, in December of 2008, the Federal Drug Administration announced that it would require makers of epilepsy drugs to add a warning about the increased risk of suicidal thoughts and behaviors to the products' prescribing information or labeling. Behaviors, I assume, means suicide attempts, some of them successful. Depakote, the drug Jane took, is on the list. The FDA actions are based on the agency's review of 199 clinical trials of 11 epilepsy drugs—released only a month after her death—showing that patients taking those drugs had almost twice the risk of suicidal behavior or thoughts than those taking a placebo.

But what was not answered was this: had the epileptics taking the placebo had their lives upended by as many seizures, great and small, as my daughter had?

I mentally add in the cocktail of drugs—an anti-depressant and Depakote—that Jane was taking. What about that? And what about the adoption?

Normal in one family may be seen as abnormal in another

Jane and Lorraine,

Disparate thoughts about adoption creeping in today, based on comments. A adoptive mother writes about the problems her adopted daughter has (ADHD, OCD, god-knows-what-else) and and I immediately remember my daughter whom I relinquished had epilepsy, and the social problems that stem from that. But what I did not expect is that when I met her adoptive parents, her adoptive mother would ask if there was mental illness in my family. This was after I had assured them that there was no history of epilepsy either. Here I am, the "New York Career Woman, "as she told me she had described me to her friends...being asked about mental illness. Heritable mental illness. 

I was like, What? What gave you that idea? And of course it was daughter Jane's epilepsy, and her other mother had wondered then if--since they knew so little about me, nothing other than I was Polish--if maybe...since Jane had seizures...maybe there was a history of mental illness. She said that for a while they thought that I might have been in a mental hospital when I had...our daughter. You just sit there and listen, stunned, but betray nothing. I suppose it's not an unreasonable assumption.

Are we bitter birth mothers?

Lorraine

Bitter.

It's a word bandied about about birth mothers who are not content with their situation as mothers without children to mother. Call me bitter, and it gives you an excuse to dismiss me, because, y'all know that I haven't accepted reality and made peace with the fact that I relinquished my daughter to an uncertain future.  And we birth mothers who relinquished in the Mesozoic Age of shame, shunning and closed adoptions,

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.