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.

News Flash: Knowing Your Medical History Can Save Your Life--

Yet another proof that everyone should be able to have full and complete access to their real medical histories comes from a story out of New Jersey. Rebecca Raezer was found by her older sister, who was adopted, but the woman knew that she carried the gene for breast cancer, actually a mutation of a gene, BRCA 1, that normally suppresses cancer. But the mutation increases a person's risk of getting breast cancer.

According to the National Cancer Institute, studies have indicated that women who carry these gene mutations have a 60 percent or higher risk of developing breast cancer over the course of their lives. That's right, sixty percent. Now how would you, dear legislator, dear Helene Weinstein (to name one who is adamantly opposed to open records in New York) like to be walking around carrying that gene inside you and not know it?

Yet Ms.Weinstein (of Brooklyn)  and other legislators of her persuasion continue to block giving adopted adults their original birth records--the only way adoptees can realistically access their family medical histories. As it stands now, if you're adopted in 42 states, you're out of luck. The state claims that it is "protecting " women from being harassed by their children coming back and saying, Hello, can you tell me what I should be on the lookout for? Breast cancer in the family? Heart disease? Depression? PMDD? Oh, I'm not supposed to know anything because that might embarrass someone?

How anyone can justify keeping original birth records sealed--and preventing the six million adopted people from knowing their medical histories--is quite frankly beyond my comprehension. Given what we know about the importance of a medical history, keeping them from adopted people is a willful act of cruel and inhumane treatment. It is sacrificing the health and well-being of an entire class of people to protect the "privacy" of another--who, in all likelihood knows all the details of their family medical history.

Legislators who oppose open records (because it's going to bust apart their vision of the happy adopted family somewhere in their OWN family) hide behind the skirts of women who gave up their children. Instead of admitting they are looking out for the adoptive parents who support sealed records forever! they say that we first/birth mothers want to be, and thus must be, "protected" from our children. In fact, most of us desperately want to know the children we lost to adoption. 

Apparently the legislators have not read the data (which we give them) that now overwhelmingly supports birth mothers in favor of open records. I'm looking at a draft of a study that may come out of the Evan B. Donaldson Institute soon, and the first item notes that "In one study, 82 percent of birth parents said they would be interested in meeting their children." In Tennessee, which has open records, 99 percent of the women were found to have welcomed contact from the children they surrendered for adoption. In other states with corresponding date (Arizona, New Jersey, North Carolina, New Mexico and Washington) 95 percent of the women share this view.

That's why this whole business of keeping the records sealed because of the promised secrecy is so bleepin' phony. If the legislators actually looked at the facts and figures of who wants to know what happened to their children and how they are, and who is going to drive their car into the river if the records are open, and balance some outrageous claim against the good that would come from giving adoptees access to the information of their birth, the records would be open in all 50 states tomorrow.

I'd like to strap Ms.Weinstein and a few other jokers in Albany (any any state capital) who oppose opening the records to a chair and make them watch back-to-back-to back episodes of The Locator where birth mothers are reunited with their children.

As for Ms. Raezer, she discovered a lump in her breast, and her doctor blew it off originally, but because she knew she had the mutated gene, she insisted on getting further testing, and indeed, what was thought to be a harmless cyst turned out to be malignant. She, along with her sister who was adopted, had both breasts removed. And today Ms. Raezer is the contented mother of a one-year-old. Her sister's name was not revealed because her adoptive parents do not know she searched and found her first biological genetic real family. Maybe they are friends of some legislator who votes against open records. But I digress.

How important is knowing your medical history? From the AOL story:

Carrie Zabel, MS, a genetic counselor with the Mayo Clinic in Rochester, Minnesota, says the story of Raezer and her sister is not surprising. Even though Raezer doesn't carry a mutation of one of the BRCA genes, it's possible there are other gene mutations carried in families that scientists haven't discovered yet. "For most families, these gene mutations are inherited," she says. "Therefore, looking at your family history is important." In a case like Raezer's it's especially important. "Being a young age at diagnosis is a red flag to a genetic predisposition," Zabel adds.

"Know your family history, and remember your dad's relatives are important, too," advised Zabel. She recommends that women begin performing monthly self breast exams at age 18 and that they make sure to receive a clinical breast exam from their doctor every year as well. While the standard recommendation for the general population is to start getting annual mammograms at age 40, Zabel says that even if you have a family history or a genetic marker, that doesn't necessarily mean starting mammograms earlier. In fact, a recent study published in the Journal of the National Cancer Institute suggests that the radiation from mammograms can actually put women with damaged DNA at even greater risk for cancer.

So even though knowing your family history might save your life, Weinstein and her ilk still stand at the gate and keep the records sealed. Why? Because they can.

And while legislators are rethinking their dumb and unjust position on sealed records, they ought to go the whole mile and allow the women who surrendered their childre access to the names and addresses of the parents who adopted them. To tell me I agreed to the sealed records is friggen' poppycock. It was sealed records or "We can't help you." And it was not written down in the papers I signed.

But don't get me started on this.--lorraine
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We'd love to hear stories from anyone about what the lack of medical records has meant to them.