There's an MIA tooth somewhere in my house - I think... my 7yo lost his front tooth yesterday & then actually lost it. Thanks to the god of teeth for finally taking this one, since it had been hanging there for nearly two weeks, twisted but not quite making a break for it. Once it was out, he was so excited that he wanted to show everyone in the neighborhood...and now it's gone.Under the law, women will be tested early in their pregnancies and again in their third trimesters unless they refuse. If a woman refuses, it will be noted, and an H.I.V. test will be performed on the newborn unless the mother has religious objections.
This mom had recently switched from an OB to midwives and had maybe not been retested (maybe - the nurse, let's call her Nurse Ratched, took the mom's recollection rather than asking the midwife or checking the records) in her third trimester. So she was given the option of donating some of her own blood to be tested now or waiting for her baby to be stuck. Of course she submitted. She was not told that she could decline. (we had talked about it in class & this mom was OK with being tested)
Why do I care? Not too long ago, I wouldn't have thought a thing about it...until I was asked to do an interview for a feature piece in The MotherHood (for which we took some heat and got lots of appreciation) and learned about the possibility of false positives on HIV tests during pregnancy or in newborns.
In a nutshell, here are my concerns (& the concerns of The MotherHood publisher, Lisa Duggan), published in an editorial in The Times of Trenton and relayed to our legislators in the state senate, where I spoke at hearings along with members of NOW, ACLU et al:
Today, bill S-2704, which proposes mandatory HIV testing for all pregnant women and newborns in New Jersey, is up for a vote. If the bill is approved, New Jersey would become the first state to require pregnant women to be screened for HIV twice -- once in the first trimester and again in the third trimester of pregnancy. The bill does include a provision allowing mothers to opt out of the screening, but this supposed freedom of choice is false, given that the bill also requires testing of newborn babies if the HIV status of the mother is unknown. This amounts to de facto testing of the mother's HIV status without her consent, as newborns carry their mothers' antibodies for the first 18 months of life.Screening for HIV is currently an "opt in" choice for New Jersey women. The sufficiency of this method is borne out by a recent study conducted at the Johns Hopkins Bloomberg School of Public Health, which states in part: "A targeted campaign of testing and counseling aimed at those who are at high risk for HIV would be more effective than the mass patient screening proposed by the Centers for Disease Control and Prevention."If the legislative body of New Jersey is convinced that mass HIV testing is warranted, let its members begin with their own families: We challenge all members of the Senate, Assembly, the governor's office and each member of their respective households to submit to an HIV test before mandating mass testing for their constituents.
When Senate President Richard Codey proposed the bill most recently, he referred to it as a "no-brainer," despite the fact that HIV screening tests are known to cross-react with some 70 factors or conditions, including pregnancy and flu or other vaccinations, generating false positive test results. And in spite of the well-known fact that 60 percent of infants who test positive at birth will test negative at 18 months without anti-retroviral treatments.
An HIV positive test result, false or not, implies a prognosis of death in seven to 10 years and a lifetime prescription of toxic anti-retroviral medication to commence during pregnancy. It requires that a woman have a surgical birth. A woman testing positive will be prohibited from breastfeeding her child. Having a surgical birth and not being able to breastfeed are two factors known to contribute to postpartum depression, a serious public-health issue.
If readers are thinking that some false positive test results are a small price to pay for identifying true positives, we ask that they consider what testing positive actually means. If a woman's first HIV screening test is positive, she will have to carry this psychological burden for about two weeks, until confirmatory tests prove it to be negative. However, many wrongly diagnosed women will have to wait much longer than that before learning that they are truly not infected. More than half of all persons with primary false positive screening tests in low-risk populations (e.g., blood donors or pregnant women) can be expected to test indeterminate on their rapid confirmatory test. Test results can only be resolved as truly negative by repeat testing on samples taken one to three months into the future, and as the manufacturer of one confirmatory test states, "The psychosocial and medical implications of a [false] positive antibody test may be devastating."
When examining the fiscal realities of mass testing, we can look at the national analysis shown in the recent Johns Hopkins study. It determined that the CDC's mass testing strategy, on which the New Jersey bill is based, is likely to cost $864 million for one year: "For the same price, a targeted testing and counseling approach would identify more than three times as many people with HIV and could prevent four times as many new HIV infections compared to the CDC's testing strategy."
We're concerned that the bill is silent on many critical issues. No language in the current bill indicates, for instance, where funding for mass testing and requisite treatment will come. The bill does not address how state-mandated testing would compromise New Jersey's current medical privacy laws (HIPAA) or potentially result in the loss of insurance coverage for individuals and families.
Further, child custody or public assistance to families could be unfairly tied to compliance with this testing and advised treatment protocol. With the specter of child custody hanging over their heads, mothers and babies who test positive will be forced to take the currently recommended anti-retroviral drugs. These drugs are associated with serious potential side effects and are known to cause cancer and birth defects in animal studies. This is especially troubling for those mothers and children who are later proven through confirmatory testing to have been HIV negative all along.
Mandatory mass testing is neither dependable, nor cost-effective nor legally sensible for New Jersey. It violates a woman's right to make her own childbearing and medical decisions and can potentially lead to unwarranted and drastic medical treatment in the case of false positive results.
It is most certainly not a "no-brainer."
We urge each member with the power to vote on this legislation to study carefully all the available information on HIV testing and consider the fiscal and legal implications for the state before making testing and treatment mandatory for the women and children they serve.
I am NOT against testing when it is done out of informed choice. Especially when it is targeted. What I am against is yet another taking of women's ever-eroding dominion over their own bodies and the bodies of their babies.
Oh - and now apparently NJ has now made Vitamin K injections mandatory at birth for infants too...even the midwife didn't know about this one yet.
If you're still reading, thanks for hangin' in - I know this was a long one. But I should stop writing now - I need to make an appointment to take my kid in for that extra shot he now needs in order to be legal for middle school in NJ.
*at the hearings, I believe experts said there were some 6 cases of HIV positive infants last year in NJ - I'm going from memory of the specialist's testimony though
So I watched a big chunk of the convention last night - missed Ted Kennedy & am kicking myself, but I'll watch it on Youtube.And one day, they — and your sons and daughters — will tell their own children about what we did together in this election. They'll tell them how this time, we listened to our hopes, instead of our fears. How this time, we decided to stop doubting and to start dreaming.Of course that's what I want for this country, but it's also what I want for birthing women. That we might set our sights a little higher than just making it out alive. Of course that's the point, but it doesn't mean we have to plan our births, or our lives, only to avoid disaster. Birth, like life, can be full and beautiful and powerful if we make room for that possibility. Of course there are some births that will need to be about survival. But most births do not come down to that and do not need to come down to that, especially if we choose our birth team well. That means finding care providers who trust that birth works most of the time, if we let it.
"Sometimes moving on requires understanding what happened, mastering the story and the experience, and even breaking the silence about what occurred. At times, a woman is ready to take these steps toward healing immediately after her delivery. For some individuals, this process can come years after the experience. Challenging childbirth can have a sense of “freezing in time” until the silence can at last be broken."I am thrilled to see this available, not only for my clients who might be working through a past birth, but for the many women who call just seeking some support and guidance...they have so many stories to tell and wounds to heal - this seems like a place where that can happen. I am also thrilled that they will provide consultations and education to those of us who work in birth so that we can be better prepared to listen and serve.
Many times when I speak with women about their past birth experiences, there is a recurring theme of feeling they were really not heard, that their concerns were minimized or brushed off. One step in the right direction is to try to help women be philosophically aligned with their care providers going forward. Hopefully care providers are offering evidence-based, mother-friendly care - to know all of this is called transparency. It can also be incredibly healing to be able to be heard now, even if it is after the fact.
Take The Birth Survey & let your voice be heard! See the results and view intervention rates.
"The Birth Survey is structured around the Coalition for Improving Maternity Services (CIMS) evidence-based 10 Steps to Mother-Friendly Care and other quality of care indicators. The creation of The Birth Survey has been inspired by Childbirth Connection's Listening to Mothers Survey (Harris Interactive, October 2002)...
...We hope that the Transparency in Maternity Care Project will provide information that will help women make fully informed maternity care decisions.
We also believe that maternity care practitioners and institutions must have access to feedback from their patients..."
It is safer to give birth in the following countries: Australia, Austria,Belgium,Bosnia and Herzegovina, Bulgaria, Canada, Chile, Croatia, Cyprus, Czech Republic, Denmark, Finland, France,Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Japan, Kuwait, Latvia, Lithuania, Luxemborg, Malta, Netherlands,New Zealand, Norway, Poland, Portugal, Quatar, Slovakia, Slovenia, Spain, Sweden, Switzerland, The former Yugoslav Republic of Macedonia, and the United Kingdom
In addition the the 40 countries the US (as a whole) ranks behind, NJ would also be behind: Bahamas, Barbados, Balaras, Brunei Darussalam, Republic of Korea, Saudi Arabia, Serbia and Montenegro, Singapore, Ukraine, Uruguay.
Props to ICAN (International Cesarean Awareness Network) of Somerset County, NJ for pulling together this information. According to their calculations based on CDC statistics,
The NJ maternal death rate is 60% higher than the US average.
So this isn't a simple debate of birthing preferences - this is life & death, if not for us then for our neighbors right here in NJ.
“We're concerned because we believe that there isn't enough information about the risks of cesarean section,” said New Space for Women's Health executive director Rebecca Benghiat.
Her group claims the higher rates could be linked to malpractice fears, lack of informed choices, and increasingly casual attitudes about surgery.
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