Wednesday, October 14, 2009

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.

10 comments :

  1. Lorraine, I understand your pain. My mother was taking DES (1961, MI) when she was pregnant with me, also something that was to supposedly make sure I was a boy. She had a plan and girl boy girl boy was it - I was definitely not a boy.

    When I got pregnant, I was terrified. I had been on the pill and had been treated 90 days prior to conception for cervical cancer (probably caused by the DES and other drugs). When I was 9 months an a couple of weeks pregnant, I got really scared and did all the things that they said would help induce labor - moved furniture, drank nasty fish oil, anything anyone had told me. NOTHING. Finally, on her father's birthday they took me into the hospital (she was now 5 days from being an 11th month baby). They discovered that I was indeed in the beginning stages of labor and that the baby was in trouble.

    Someone must have loved me, because after a 5 more days of them attempting to induce (ha ha) labor into a later stage, there was nothing. The head of obstetrics entered my labor room and talked to me for a minute. I was exhausted from lack of sleep. She told me either they did a c-section or we would both die.

    The hemotologist had to redo my blood line (they gave me the wrong blood) and they broke my water. The minute my blood show occured I could feel what I had not been feeling. OMG it hurt. I would not dialate. Apparently the cryosurgery had damaged my cervix (I thought).

    Needless to say we both survived. But, after reunion, I found out that my daughter had the same exact problem with dialation. She had both her children c-section.

    So, I wonder if I have another thing to "thank" my mother for.....

    Too bad my daughter had no medical history. Even though her adoptive parents had a complete record of her birth. Always the lies.

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  2. Adoptees die every day from diseases/conditions that medical history could have provided the necessary information to find a cure, to get a "closer" examination, or to get the proper medication to sustain life.

    People die every day because mean, selfish, apathetic people sealed birth records and keep them sealed.

    I'm so sorry about your daughter. Both of you were treated like "industry" discards given no human rights, no compassion. As if human relationships are any business of the "state" or any profitting "industry".

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  3. DES was also given to mothers to stop their breast milk. That would be a double whammy of DES if the mother had taken this drug during pregnancy to prevent miscarriage.

    According to the US Department of Toxicology, DES is more toxic than mustard gas and it is known to be a cancer causing agent.

    In 1978, the FDA removed postpartum lactation suppression to prevent breast engorgement from their approved indications for DES.

    DES is now only allowed to be used in cases where the person already has cancer (mainly advanced prostate cancer and advanced breast cancer in post-menopausal women).

    Mothers who were given DES for all of the above reasons have a higher rate of breast cancer which often does not appear until later in life.

    There is another thing that would have increased DES ingestion which would be a third whammy to any mother who had it during pregnancy to stop miscarriage and milk.

    During the 1960s DES was used as a growth hormone in the beef and poultry industry. It was later found to cause cancer and was phased out in the late 1970s.

    And people wonder why the cancer rate is soaring among the elderly.

    The Journal of Clinical Oncology predicts a 67 percent increase in the number of adults age-65-or-older diagnosed with cancer, from 1 million in 2010 to 1.6 million in 2030 in the US.

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  4. Ugh, this makes my heart ache and me feel generally panicky. I was adopted in 1981 in NYS and only now, 28 years later have I found the courage to start the search for my origins. And I have been naively surprised to find...NOTHING. The adoption agency has somehow "lost" my records; the lawyer said even if he could give me my files without my AP's consent--which he can't--they were left at his old firm which has a policy of destroying files after 10 years. I was 10 years old when my files were potentially all burned up!!

    Thankfully I am very healthy--good teeth and everything ;). But my husband and I are thinking about having our own children and all the books say, "talk to your mother about her labor experience." Sadly, that is not helpful in my case. I understand NYS wanting to give people a "right to privacy", but there is no "right to absolute secrecy" which agencies seem to love to grant.

    On the other hand, I am very nervous that my own natural mother is not like you and does not want to be found. Maybe she is that woman whom all APs seem to think the mother of their child is: emotionally distant and incapable of wanting their child.

    Thank you so much for your writings!! Please keep up the good work!

    ReplyDelete
  5. Eliza,

    I think it is most unlikely your birthmother does not want to be found. The birthmother hiding in the closet is largely a myth perpetrated by some adoptive parents and some segments of the adoption industry.

    Although you don't have any records, you can have a successful search. Check out the search tips on the Bastard Nation and the American Adoption congress websites. Register with the International Soundex Reunion Registry, ISRR.

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  6. Dear Eliza

    Many mothers were told not to look for their children because they were told that they would mentally and emotionally destroy the adoptee.

    Many mothers were told to sit and wait to be found.

    Many mothers just don't feel they are worthy of their children.

    Many older mothers may not understand how to use the Internet to search.

    Many mothers believe that they don't have the right to search.

    Most mothers want to be reunited but they are afraid of hurting the adoptee, afraid that they are not good enough or feeling so shamed by their families that they don't know how to - but most want to.

    I had the reverse situation.

    My son did not look for me.

    Long story short - I managed to find him and asked him why he didn't look for me.

    He said that he thought that I would be disappointed that he was not a doctor or lawyer - how sad.

    However, he was very happy that I found him and I have not been disappointed. I am in fact very proud of him and his accomplishments.

    Some people such as my son want to be found but they don't search for a whole list of reasons.

    I hope that brings some comfort and understanding to you.

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  7. Me: sick/allergies out of control
    Computer/internet connection: sicker.

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  8. Lorraine,

    Your story is maddening. The agency was withholding vital information regarding the health and well-being of a child. They were negligent, it would seem. If privacy was an issue, then the information could have been shared with the a-family and the doctor anonymously.

    The thought of little Jane wearing a hockey helmet to school is heartbreaking. What I don't understand is why the adoptive parents weren't demanding that the agency contact you for health information. Wouldn't knowing that the doctor wanted information from you be enough cause for extreme concern?

    Something could have been done to help Jane with the seizures had people actually used their brains and put logic ahead of fear; instead they protected the adoption system's barbaric secrecy proviso.

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  9. I continue to be disgusted by the callousness shown by the adoption industry's secretkeepers. Apparently their secrets are more important than other people's lives. That says a lot about whether they are acting in the best interests of mothers and adoptees... or themselves.

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  10. People die every day because mean, selfish, apathetic people sealed birth records and keep them sealed.

    ReplyDelete

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