Selected stories from issues #1-4 in 2007
Winter 2007, Issue #4
The Everything Issue
Fall 2007, Issue #3
The House & Home Issue
Summer 2007, Issue #2
The Life & Death Issue
Spring 2007, Issue #1
The FatherHood Issue
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Winter 2007, Issue #4
THE EVERYTHING ISSUE
SELECTED STORIES FROM ISSUE #4, 2007:
* VBAC'ing: VICTORIOUS BIRTH AFTER CESAREAN
In the United States, women are increasingly giving birth by
cesarean section, contributing to an all-time high, national rate
of 30% in 2005 (double the recommended healthy rate of 15%
by the World Health Organization). And a first time c-birth
almost guarantees a second, scheduled, surgical birth as a
woman's options are severely curtailed by medical malpractice
policy. If you want a vaginal birth after a cesarean-section,
where can you go?
By JEN MAIDENBERG
* TWENTY YEARS OF MOTHERING IN MAPLEWOOD
It seems like everything about parenting has changed since
Marlene and Eileen raised their kids here in the '60's.
Does it still takes a village to raise a child?
By NICOLE JAMES
VBAC'ing: Victorious Birth
After Cesarean
by Jen Maidenberg
Before I became pregnant, I remember telling a friend that I would most likely “be a C-section.” Somehow, I had gotten it into my head that short girls like me couldn’t birth babies vaginally. At forty weeks pregnant with my son, my doctor encouraged me to have an induction. My baby “looked big” on an ultrasound and I risked “ending up with a Cesarean,” she said, if the baby got much bigger. Even though I had read that induction was one of a few medical interventions that could actually lead to a C-section, I agreed to be induced. After all, I was short and big babies don’t come out of short girls, right? If we could only get him out while he was still small, I thought, he’d have a better chance of making it out vaginally.
When I think about it now, I’m amazed how little I really knew about the “game of birth” before I stepped up to bat.
At 8:00 p.m., forty-one weeks into my pregnancy, I checked into the hospital for my induction. One cervidel gel insert, one pitocin drip, two epidurals and twenty-three hours later, my 7-lb., 14-oz. son was born by Cesarean section. There was no emergency. No terrifying beeps from the required fetal monitor. No doctor shouting “Prep her for the O.R.—stat!”
The diagnosis? Failure to descend. Arrested Labor.
Sound familiar?
Over the next two years, I learned that four other post-term women who birthed their babies with my obstetrician had also “failed to progress” and ended up with C-sections after being induced. None of these C-sections were emergencies. All four women had simply stalled during their labors.
Despite a significant amount of blood loss and postpartum anemia, my surgery and recovery were considered a success. The baby scored all nines on his Apgars and, after they sewed me up and wheeled me back to my labor and delivery room, I was able to nurse him. (I wasn’t able to eat, however, for another 24 hours.) At my two-week follow up visit, I asked my OB whether I could try a vaginal birth next time around. Her answer? “We’ll see.” I lived in Arizona at the time. However, my first OB in New Jersey basically gave me the same answer.
When I asked her if vaginal birth would be an option for me, she told me that based on a diagnosis of “failure to descend,” I had less than a 20 percent chance of delivering vaginally. Her preferred method of delivery for my next birth would be a scheduled C-section one week before my due date.
I didn’t challenge my doctor that day. Nor did I push her on the option of a VBAC (vaginal-birth-after-Cesarean) once I became pregnant a few months later. I became resigned to the idea that I would automatically birth my next baby by C-section. Then, during a playdate, a local mom told me about a Maplewood VBAC support group run by Elizabeth Fleming.
The women in this group would snap me out of my state of resignation and provide me with the love, support and hard facts to inspire me to attempt a vaginal birth the second time around. While my Cesarean section was filed in the “F” drawer with the other “failures,” Elizabeth Fleming’s first birth by C-section was filed in “B” for breech.
“My midwife told me she used to deliver breech babies,” Elizabeth recalled. “but hospital policy changed and she no longer was allowed to attend them anymore. As I began to do research, it became clear that it’s impossible to find a care provider who will do a breech birth, at least in the greater New York area.”
Elizabeth had her C-section five days before her due date. “I wanted to wait to go into labor, but my midwife said she thought it was better to schedule it so that I could have the best doctor available on call.” “I was comfortable with that decision at the time,” said Elizabeth. “I figured if I had to have a C-section, I wanted to make it as calm, safe and predictable as possible, but in retrospect, I wish I’d waited for my body to at least tell me my daughter was ready to come out.”
Though grateful to have a beautiful, healthy daughter, Elizabeth felt a great sense of loss regarding her birth. However, some of her friends could not understand why the birth itself mattered so much.
Following a very lonely post-partum period, Elizabeth started the VBAC support group because she felt that there wasn’t enough community support for women considering a VBAC. “It was hard to try to explain my desire for a vaginal birth and I wanted to find like-minded women who understood my sadness over my C-section and who would be enthusiastic about VBAC in general. I needed an outlet for my own anger and felt that other women deserved that outlet as well.”
So, Elizabeth chartered an official chapter of ICAN (International Cesarean Awareness Network) for Essex County in spring 2005 and began holding monthly meetings in her home. Despite the association with ICAN, Elizabeth wanted the meetings to be less about ICAN’s agenda and more about providing women with information, statistics and support in both their prenatal and postnatal journeys.
The information that proved most helpful to me as I began my own education around VBAC was which local hospitals and which local providers were VBAC-friendly and which were not. St. Barnabas hospital in Livingston, for instance, has a 44 percent C-section rate, which is higher than the state of New Jersey’s 36 percent rate, which is already one of the highest in the nation, according to the most recent data culled by ICAN. (The overall C-section rate in the United States hit 30% percent in 2005, according to ICAN. That’s twice as high as the World Health Organization’s recommended rate of 15 percent.)
It was harder to get VBAC statistics for local doctors and midwives. So naturally, that information came to us anecdotally. At each meeting we learned which doctors supported VBACs and which seemed to strongly encourage repeat C-sections. Many of us switched providers mid-pregnancy. I left my OB practice in favor of a VBAC-friendly combination midwife and OB group 24 weeks into my second pregnancy. One woman switched to a new midwife a week before her due date!
The questions we considered included:
? What is the C-section rate at this hospital? For this provider?
? Will I be allowed to go over my due date? If so, how long?
? Will I need a constant fetal monitor?
? Will I be confined to bed?
? Will I be allowed to labor in the shower? In the tub?
? How long will I be allowed to stay at home?
? Will the hospital require me to be IV-ready with a hep-lock?
? How long will I be allowed to push?
Some New Jersey hospitals actually deny a trial of labor to women with a previous cesarean and VBAC is not an option. If your doctor only has privileges at that hospital, you must choose: the doctor or the attempt to VBAC.
As my belly grew bigger and my due date approached, I felt increasingly confident in my decision to attempt to labor. I felt empowered by statistics (75% of all women who attempt a VBAC succeed in having their babies vaginally) and by the support of a room full of courageous, determined, like-minded women.
It’s funny. When I was pregnant the first time around, I felt very much alone. I was 3,000 miles away from my close friends and family. I had no pregnant friends and no women nearby to guide me and support me on my road to childbirth. This time, however, I was blessed with a sisterhood.
It’s been more than two years since Elizabeth Fleming started the VBAC support group here. Some of us have succeeded in birthing our babies vaginally after a Cesarean and some of us have not.
In our own little informal study, it’s hard to say what leads to a successful VBAC and what leads to a repeat C-section. Some of us had doulas, some of us didn’t. Some of us went with midwives and some of us went with OBs. Some of us chose to have an epidural for pain relief and some of us labored drug free. No particular factor seems to have outweighed another.
We all share one thing in common, though, besides our previous C-sections. We believe in a woman’s right, ability and decision to choose to birth a baby vaginally after a C-section.
And, every time we meet to discuss this right and ability, and every time we leave an OB practice because it won’t allow us a trial of labor, and every time we take our business away from a hospital because their C-section rate is too high, we succeed.
This time, instead of being categorized by our failures, we are distinguished by our convictions.
• For more information about the Maplewood-based VBAC support group, contact Elizabeth Fleming or Marta Lucia Vargas, co-leaders, at freewillbirth@yahoo.com.
• International Cesarean Awareness Network, Inc.:
http://ican-online.net
Jen Maidenberg is a mom to two boys and an advocate for choices in childbirth. She may be reached for comment at thermotherhood@comcast.net.
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Twenty Years of Mothering
in Maplewood
by Nicole James
A wiry boy plods down a quiet Maplewood street, pausing now and then to balance the parcel on his shoulder. To accommodate its size, his head is tilted awkwardly, so that his neck has begun to throb. From her perch in the house, his mother’s anxious eyes drink him in as he rounds the corner and she runs to the door, throwing it open. “Where have you been? I’ve been looking for you all day!” He says nothing, but sets down the box and throws back the flaps: fireworks. It had been a long walk to Irvington Bus Terminal and back and he is very tired. But the pure thrill of a forbidden bus ride to Chinatown has been worth it to him. He is ten years old.
Forty years later, Ryer Malone’s mother is still glad she moved to Maplewood for the sake of her “cantankerous” older son. Moving here in 1966 from East Orange on the advice of Ryer’s teacher, who recommended the schools, she found a town whose heart was large enough to embrace her fiery child. While there was trouble in school from time to time (classes that were too easy, a principal who was too hard) Marlene remembers a neighborhood that was ideal for raising children. “All the kids played together and I never locked my doors. My door was a swinging door—I had kids pouring in until eight or nine.” It was a carefree, safe place to be a child, where all the young were under watchful eyes.
Such are the memories of Eileen Racioppi, who arrived in Maplewood as a young bride in 1961. Her three children, now aged 40 to 45, grew up here and, like Marlene’s, went to the neighborhood schools. She remembers a town where the worst threat to children was the danger of skating on thin ice in winter. Living in Maplewood was “wonderful.” “We were on a dead end street; the kids played on the street, went by themselves to the park. You never heard of kids being molested, kidnapped, anything like that,” Eileen recalls, and Marlene agrees. “They ran wild! The kids came home, changed clothes and went off to play.” But it wasn’t all pure. “Later, much later, I’d find out how bad they were! But boys will be boys.”
Children did more with less, both moms agree, and were better for it. “We didn’t give them stuff. They made stuff,” Marlene declares, while Eileen observes, “Kids today are raised differently than our kids. Parents today are a little too lenient, don’t demand enough of their kids. They have a freer hand.”
Some things have definitely not changed. For one, every mother needs support in her mothering. While we modern Maplewood moms enjoy moms groups, playgroups and play dates, our forebears relied on neighbors and friendships in the community. They found like-minded mothers through shared causes, such as starting a lunch program in the schools, in Eileen’s case, and, in Marlene’s, developing an arts program for the elementary schools.
But mostly, support was right outside your back door, literally. “Support was knowing your neighbors,” Marlene says, and know them she did: they shared her freezer, had keys to her house, mentored her, took care of her boys. She can still remember all of their names for blocks and blocks. For Eileen, her greatest support was her parents, with whom she lived from the day she married until they day they died. “I never left my kids with a stranger. If [my parents] weren’t there, I didn’t go.”
Much of the old Maplewood still exists today: a sense of
community, mothers connecting at the library, at PTA, or after school activities (lacrosse, soccer, Boy Scouts, gymnastics, cheerleading). Mothers have been socially aware, started their own businesses, seen needs and met them. The challenge of balancing work and family and still finding room for creative passions has been ever present. Even in the sixties, not every mother had the ability or the desire to stay at home: Marlene worked throughout her boys’ childhoods, while Eileen feels lucky to have been able to stay at home. These choices are still just as challenging, if not more so, for mothers in this town.
And yet there are differences. Today, we’re often further from family support, but have a variety of mothers’ groups designed to support us on many levels. Perhaps our children can’t safely run from house to house anymore, but activities and opportunities for them to connect are practically growing on trees around here.
Maybe we don’t know our neighbors as well, but those we do know probably represent a mélange of cultures and backgrounds that our mothers new little about.
Our Mamas’ Maplewood was a different time and we’re raising our kids in a different world. We have a lot more to worry about than thin ice in winter. But there is wisdom in these mothers’ experience. Know your neighbors and let them in. Seek out the seniors for advice from time to time—as Eileen puts it, “some of the old values are better than the new values.” Dare to pare down your child’s schedule so that there is time to run wild, because play is a child’s work. Most important, be grateful: it’s not a
perfect town, but Maplewood is and has always been a
wonderful place to mother.
Nicole James is an elementary and preschool teacher and administrator, currently home full time with her toddler. She is thrilled to call Maplewood home.
Fall 2007, Issue #3
The House & Home Issue
SELECTED STORIES FROM ISSUE #3, 2007:
* WEAVING A FUTURE:
RWANDAN WOMEN HELP A NATION REBUILD
The 1994 genocide in Rwanda left a devastated nation depleted
of its people and its hope for a future. Learn about two brave
women helping to reverse the devastation through
entrepreneurship and education.
By KAMYRA HARDING
* ONLINE EXCLUSIVE
SENSORY SPACE DESIGN:
THERAPEUTIC SENSORY ENVIRONMENTS FOR CHILDREN
Creating an aesthetically pleasing and therapeutic home
environment for a child with sensory processing problems is
both an art and a science—and entirely possible.
By ELIZABETH MEYER-GROSS MS Ed, MS OTR/L
* TAKE YOUR MEDICINE
In this column, Dr. Cotler addresses the assertions made
by Christine Maggiore in her interview by Kim Collins in
issue #2 of The MotherHood, concerning HIV and AIDS.
A regular column in The MotherHood; DR. DONALD COTLER
writes regularly about healthy parenting.
Weaving a Future:
Rwandan Women Help
a Nation Rebuild
by Kamyra Harding
The Republic of Rwanda, known as the “Land of a Thousand Hills,” is located in the Great Lakes region of east-central Africa. It is bordered by Uganda, Burundi, the Democratic Republic of the Congo, and Tanzania. With approximately 8 million residents, Rwanda has one of the densest populations in Africa. The country is known for its infamous 1994 genocide that resulted in the deaths of over 800,000 people. Today, 89% of the population survives on agriculture, which may provide enough food for a family but is not a reliable source of income for other necessities.
Rwanda has been entangled in conflicts dating as far back as recorded history—who’s oppressing whom depends upon who’s telling the story and for what purpose. For generations, the two main ethnic groups, Hutu and Tutsi, have traded opportunities to dominate each other. On April 7, 1994, the Hutu-led Rwandan government publicly called for the extermination of all Tutsi; hence the 1994 genocide. By July 1994, 800,000–1,000,000 people were slaughtered (the actual count is unknown.) Many more narrowly escaped death by fleeing to neighboring countries.
The 1994 genocide was not an isolated incident. Prior to this tragedy, peace evaded Rwanda for decades. By the time the most recent violence ended, the country was devastated—there was little infrastructure, farming land had been ravaged and a significant portion of the male population was gone: murdered, living as refugees in other lands or jailed for war crimes.
Prior to the genocide, Rwandan women were relegated to subservient roles. They were not formally educated, could not own property and were subjected to the death penalty for bearing a child out of wedlock. A woman’s role was to maintain the home under the direction of her husband. The exhaustive list of her duties included all cooking, cleaning and farming. After the genocide, the absence of men forced women into leadership positions within families, communities and the national government.
Genocide widows, oldest daughters and other surviving women were holding together their families and the nation, all while dealing with the aftermath of a violent war and without resources to rebuild their homes and country. The few present men were emasculated by lack of employment and power. Many projected their anger at the situation onto their wives in the form of domestic abuse. Life was hard. Some undereducated and unemployed women were forced into prostitution. Then the AIDS pandemic swallowed the African continent and famine struck Rwanda. Many women found themselves asking, “What can be done? Where do we start?”
Janet Nkubana and Kaliza Karuretwa are two women who answered these questions. Both have influenced the rebuilding of their ancestral home. Janet Nkubana is founder of Gahaya Links, a handcraft export company that works with over 2,500 women artisans in cooperatives and associations in rural areas of Rwanda. The women are mainly genocide widows, girls heading households and women with husbands in prison, convicted of genocide crimes.
After growing up in exile in Uganda, Janet Nkubana returned to Rwanda after the 1994 genocide. By then she was single and the head of household that included her five children, orphaned nieces and nephews and her aging mother. Yet, she had the sensitivity to observe her surroundings and “recognized problems beyond my life.” In 1995, Janet began organizing a small group of rural Rwandan women to make baskets like the ones her mother and other women made while they lived in refugee camps. The baskets were used by the women and sold to the few brave tourists they encountered.
At the time, Janet’s sister, Joy Ndungutse, lived in Washington, D.C. and whenever Janet visited Joy she brought baskets to distribute as gifts. People adored them. In 1996, the sisters decided to try selling the baskets. They began in Washington-area yard and garage sales and quickly expanded to flea markets. The experience was so lucrative that in 2003 they pooled their resources and founded Gahaya Links. Their vision surpassed selling baskets—they wanted to be a catalyst for change in the lives of poor women artisans and their families. That same year Parade Magazine published a feature article about Gahaya Links.
In the midst of Gahaya Links’ birth, Kaliza Karuretwa was looking for a hook. Kaliza grew up in Congo as a refugee. In 1995, she returned to Rwanda where she completed her formal education. After increasingly responsible government jobs, she was sent to work with the Rwanda Embassy in Washington, D.C. Her job as second counselor involves identifying trade opportunities for Rwandan entrepreneurs and her challenge is convincing partners in the United States to think about trade with, rather humanitarian aid for, Rwanda. Working with Janet Nkubana and Gahaya Links is a natural fit.
Kaliza’s charge is to find a goods market for Rwandan entrepreneurs. She sees this as a practical step towards addressing her homeland’s rebuilding challenges. Her strategy is to look to her tradition. When considering products she asks herself, “What are we good at? What are authentic Rwanda skills?” With their 200-year history and no technology requirements (impossible in a country still lacking dependable electricity), the baskets made perfect sense.
Janet and Kaliza’s inaugural venture was a store in Chicago, Illinois. The women sent 100 baskets to the shop where all were sold in one day. Kaliza attributes the success to the fact that people in the United States are moved when they find “beauty from a place they only heard ugly news about.” The baskets are not just earning money for the weavers, they’re “changing perceptions of Rwanda.” By 2005, Gahaya Links was exhibiting during a conference in New York City’s Jacob K. Javits Convention Center, where Janet and Kaliza were introduced to a representative of the Macy’s department stores and a new partnership was formed.
Today, Gahaya Links upholds fair trade practices in buying and selling handcrafts mainly in the United States through the African Growth and Opportunity Act, which enables them to sell goods tax-free in the U.S. The weavers produce 200,000 baskets per year and Gahaya Links is diversifying the product base to include beaded bracelets. Gahaya Links has ambitious plans that include expanding the export business, training additional women, building an exhibit center in the capital, Kigali, Rwanda, and further changing the lives of rural families.
This is more than an economic success story for a few business people. These baskets and the women who weave them are changing the social fabric of their country. Weavers possess a newfound self-determination because the money they earn goes directly to them. This empowers the women to take control of their lives and their families. Kaliza proudly announces “No weaver is beaten in her home,” a small miracle in a country with a bloody past. “She is queen of house.” The men in her life are dependent upon her income and instead of resenting it, the men are contributing by assuming domestic chores to free the women’s time for weaving. Together these men and women are strengthening families by using respect as the foundation of their relationships. Some men are even weaving—a first in Rwanda. The results are having a domino effect on the local and national economies where it’s especially exciting to see rural communities completely transforming from poverty to self-sufficiency.
The average per capita income in Rwanda is $0.79 per day. Weavers earn $3 per day, a wage on par with Rwandan teachers and cabinet ministers. Weavers’ children attend school because their mothers can purchase supplies and uniforms. Malaria rates are down in Rwanda because more families can afford the $1 mosquito nets that protect against infection. The ripple effect is never-ending.
Weavers are not only helping their immediate families—women are now philanthropists. As a group, weavers give $1.20 each to Rwandan famine victims (this amount is comparable to $1,000 in the U.S.). Last year, they led a government initiative to forego the traditional Women’s Day celebration parades and the money that would have been used for those was donated to famine relief efforts.
There are non-monetary residual effects to the weaving groups. During lunch breaks, weavers receive empowering information about family planning, finances and nutrition. They also are able to find forgiveness within themselves. As the country heals, reconciliation happens within the weaving groups—weavers from opposing sides during the war sit together, settle differences and realize amazing transformations as they work side-by-side utilizing the same solution to rid their respective families of poverty.
Weaving is an alternative source of income for former prostitutes, many of whom are HIV-infected. For HIV-infected women, these are Baskets of Hope. Not only are the women respected for being wage earners and allowed to socialize without discrimination, they are given a new focus. An HIV-infected weaver told Janet, “Now I think about weaving and the money I earn, rather than about the day I will die.” Women who are not HIV-infected learn from their infected peers. Weaving gives them incentive to abstain from unsafe sex so that they may stay healthy to continue weaving and provide for themselves and their families.
Rwanda’s post-genocide political environment is conducive to this type of social change. The new Rwanda Constitution, ratified in the 2003, requires 30% representation of women in all levels of government. Today, women are involved in policy from the grassroots to top national levels. They are decision makers; 39% of Parliament members are women—Rwanda now has the highest number of female cabinet ministers in the world. As a result, sweeping progressive changes have been made. For example, all girls are educated equal to boys, girls inherit equal shares of estates and women may own property.
Female empowerment in Rwanda is inspiring. Janet Nkubana has taken the Gahaya Links success story all over Africa to illustrate something that is replicable in other countries. “African women can be responsible for their own futures,” she says. “They need to be creative. Take what’s within you. There is something you can do to change your life. This is also true for women in other parts of the world, like Afghanistan.”
FOR MORE INFORMATION:
• Gahaya Links baskets and bracelets are on sale at select Macy’s locations and online at www.macys.com.
• To learn how you can support women suffering the effects of war and famine, please visit the International Rescue Committee’s website at www.theirc.org and the U.S. Committee for Refugees and Immigrants at www.refugees.org.
Kamyra Harding is a management consultant and freelance essayist. She writes about families and parenting. Her work can be found at www.kamyra.com.
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Sensory Space Design:
Therapeutic Sensory Environments for Children
by Elizabeth Meyer-Gorss MS Ed, MS OTR/L
Sensory integration is the neurological process that organizes sensation from one's own body with sensation from the environment and makes it possible to use the body effectively within the environment. It is information processing. Sensory Integration Dysfunction occurs when a child is unable to take in information from his body first and the environment second. Although not an official diagnosis in the ICD-9 Manual, it is observable by itself or in combination with other disorders, such as ADD/ADHD, the autistic spectrum and other developmental delays.
As a school, home-care and private clinic pediatric occupational therapist for many years, I’ve had numerous opportunities to provide treatment to children of all ages with Sensory Integration Dysfunction. Invariably, parents are eager to carry out the kinds of therapy at home that they’ve observed being done at a sensory gym; a space where occupational therapy for SID often takes place. Many parents report that their attempt to create a space at home that is therapeutic, yet consistent with the home décor, is a daunting experience.
I’ll never forget the day I walked into a modest sized living room in a small three room apartment where the parent had been told by a previous therapist that a ball pit would be therapeutic for her tactile defensive son. There, taking up the entire walking space of the living room, was the ball pit dutifully purchased by this caring mom.
My partner and I run a placement agency, treatment facility and sensory gym in Yonkers, New York. When we were planning our own “sensory space,” we called upon a friend who is a design artist and educational professional to assist us in the installation of our sensory gym and quiet room. The final result of our team effort is a therapeutic environment designed to meet the needs of a variety of sensory processing disorders—but one that is also aesthetically pleasing.
After our own experience (and the memory of that ball-pit), we realized that both parents and school administrators could use the help of experienced OT’s to create appropriate spaces for children with various sensory processing problems. It was then that we decided to form a new company that could design and install similar places for private homes and public facilities.
All five senses are at the core of how people relate, understand and act toward those around them, as well as the environment they occupy. When one or more of these senses are impaired or fail to be integrated with the others, a child’s ability to relate or communicate can be affected. A specially designed space can be a therapeutic tool to help facilitate sensation integration. The space will ideally include movement, light, sound, touch, and pressure chosen specifically to address a child’s specific area(s) of dysfunction.
First, a state certified Occupational Therapist will do a complete assessment of a child to determine the type of sensory integration problem that she experiences. Then, the child’s needs are measured against the available space. A well designed space will assist a child with low level responsiveness to sensory stimuli—by arousing or alerting her senses—or it can facilitate serenity for the child who is anxious and overly stimulated by what he senses. These spaces can be designed with the necessary sensory treatment items at the lowest cost possible and also take into account the overall design of the home or school.
A sensory space can be an entire room or located in just one corner of a child’s room. It can be a portion of the family room or a portion of the basement. Ideally, it is a special place designated for use by the child with special sensory needs. The choice of color, type of music, types of touch and movement devices are individually selected and arranged in the room for easy and safe access so the child may use the area unsupervised. Using the color blue, for example, would be for calming, while bright yellow would be useful for alerting. For a child who vacillates from one state to the other, the room can be painted one half pale blue and the other half bright yellow. The child can be coaxed to the best area for his mood that day.
A sensory room, like the smaller sensory space, is a larger therapeutic environment designed to serve a wide range of sensory issues. In a sensory room, suspended equipment and other large movement pieces can be included. Some children with sensory integration dysfunction need a retreat from tension, sensory overload and the anxiety the real world can produce. It is a sensory safe haven. A child who is visually aroused by everything will find comfort in soothing colors, dimmed lighting and pleasurable slow moving visuals. They may want to retreat to a dark, quiet tent-like chair or a cushy enveloping floor pillow.
Children who crave movement and don’t find it in their typical environment will find release in the rhythm of a pendulum swing or the beat of a safe, small trampoline.
The largest group of individuals who face these struggles on a daily basis are individuals with autism, who greatly benefit from well designed sensory spaces. Sensations are crashing in on these children and they are unable to regulate their reactions. They experience difficulty in trying to calm down from the barrage of sights, sounds and feelings they encounter. The consequences of such a modulation or self-regulation problem are seen in their inability to communicate, their inappropriate behaviors (that impede learning in traditional settings) and their feelings of disconnectedness from peers.
Sensory Integration Dysfunction is not restricted to the autistic spectrum. There are many children and adults who have milder variations of sensory processing disorder that can sometimes interfere with a sense of calm and control. Children with Attention Deficit Disorder with Hyperactivity (ADHD) have low sensory arousal levels. As a result, they are constantly seeking new and different information and sensations, hence the “hyperactivity.” A sensory space can help them stabilize. There are also many children functioning in the mainstream, who grow to have successful jobs and relationships but who quietly suffer from mild forms of sensory processing disorders. Any and all of these groups mentioned would benefit from a “Sensory Space”.
For more information on designing spaces for children with sensory processing problems, contact Elizabeth Meyer-Gross or Heather Meyer at Sensory Space Design, 914 403-3345, or visit them online at www.sensoryspacedesign.com.
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Take Your Medicine
by Dr. Don Cotler
HIV causes AIDS.
Acting as if this isn’t so causes people to die unnecessarily. HIV positive women will infect their infants at a predictable rate. Modern multidisciplinary health care can reduce that rate to near zero. This is all true in the real world, the world of consequences, where ships have to float and planes have to fly. Unfortunately, many people act as if they live in another world, a world where sincere belief (the President calls it his “gut”) is the sufficient condition for truth.
Christine Maggiore is a star in that other world (“Mother Courage,” Issue Two, The MotherHood, 2007.) She is an HIV positive woman who has been lucky enough so far to not have AIDS. Ms. Maggiore, who doesn’t know how she contracted the virus, has concluded that HIV does not cause AIDS and has, therefore, eschewed the known means of preventing transmission of HIV to her children, even going as far as to breastfeed them and refuse to have the children tested for HIV. Ms. Maggiore has become an iconic figure in the “HIV-denial community.” Her legend recounts a range of iconoclastic ideas—from relatively harmless anti-“mainstream” trendiness like giving birth under water, through potentially hazardous anti-“mainstream” irresponsibility like not immunizing her kids, to deadly anti-“mainstream” radicalism like denying the danger of HIV.
She is a major part of a small industry that has developed around this last idea, selling books, garnering media attention and gracing the covers of national and local parenting magazines. Her arguments for her belief, bolstered by very selective and misleading use of scientific literature, are apparently plausible to some; but they are considered ludicrous nonsense by virtually every expert in any related field.
People who comfortably dismiss the near unanimity of the scientific world on this issue have no appreciation for the breadth of scientific knowledge and the interconnectedness of scientific concepts or they suffer from an abnormal level of mistrust of authority, or (usually) both. A culture that will consider a person well educated despite an absence of even the most rudimentary grounding in any kind of science produces a lot of these people. These are the kind of people who believe that the “so-called Moon landing” was filmed in the Southwest desert, since escaping from earth’s orbit is physically impossible. It doesn’t occur to them how many other things must also be wrong if they are right. It also doesn’t faze them to believe in a conspiracy of all the physicists and scientific societies in the world, along with all the world’s governments. Of course, HIV deniers are doing the same thing. Look at the signatories of the Durban Declaration on AIDS to see the extent of the scientific consensus they dismiss. If a conspiracy this large and well disciplined actually exists, we have bigger problems than what blood test to get.
Ms. Maggiore’s public career, indeed her entire movement, should have come to an end when her three year old daughter died of complications of AIDS. But HIV denial, like other irrational beliefs, is immune to disconfirmation. If the world doesn’t end when you predict it will, you retire until you can recheck your math. If removing mercury from vaccines makes no impact on autism rates after six years, blame mercury from Chinese coal and the dental fillings of cremated corpses. If your beliefs about HIV lead to personal tragedy, you get professional witness Mohammed “HIV is a harmless virus”Al-Bayati to concoct a glib but nonsensical reinterpretation of an autopsy report, or you blame a conspiracy of lab technicians and a crooked medical examiner.
In the early twenty-first century a responsible citizen is confronted by many issues that require at least a little familiarity with science to be properly understood. In fact, the number, importance and complexity of such issues are rapidly increasing. At the same time that reliable information is becoming more vital, the creation and consumption of information are becoming more democratized via the Internet. With no Walter Cronkite to tell us how it is, the job of “editing”—that is endorsing or rejecting information—falls to more, and more varied, people. These are the opinion leaders, the influential bloggers, anyone with even a slightly privileged place in the public square. In an information society, where anyone’s opinion can reach millions of people instantaneously, the new “editors” increasingly share a function that used to be the province of a few well-known professionals. With this influence comes responsibility. Promoting irrational points of view distorts public discourse, leads to bad policy, harms individuals, and moves us backward as a society. Ignorance can no longer be accepted as an excuse. Anyone in a position to confer credibility on another must be mindful, lest they themselves lose what they would confer. For example, New Jerseyans are currently debating the risks and benefits of mandatory HIV testing for pregnant women. How far should the state go in protecting children when doing so may expose their parents to discrimination in insurance coverage, employment, etc.
A person who believes that AIDS is a “genocidal hoax” and that mandatory HIV testing is a means of mass mind-control (“the AIDS Trance”) has nothing meaningful to contribute to this debate and should not be given a special place at the table. A knowledgeable reader should realize immediately that these assertions can’t be true. (Try HEALAIDS.com and see if you agree with me. I will gladly stake my credibility on my position that this is bizarre fiction.)
In addition to their responsibility to understand the rudimentary science of an issue, consumers and “editors” of information must remember that extraordinary claims require extraordinary evidence. If you believe you have had sex with an alien, don’t expect much respect for your point of view until you give birth to a silicon-based life form. If you believe that HIV doesn’t cause AIDS, you have a lot of explaining to do.
Except in South Africa, where top officials joined their camp, the HIV denial movement is having a small but insidious effect on health care and public health policy around the world. This is not an essentially harmless irrationality like Astrology or Homeopathy (much more on the “memory of water” some other time.) In addition to furthering the larger agenda, Christine Maggiore boasts that she personally has convinced and supported at least 50 women to follow her example. Figuring two children per mother, that’s about two dozen AIDS babies. Her enablers in the media and elsewhere should consider whether they want to help add to that number.
Donald N. Cotler M.D., FAAP, practices fatherhood and unclehood in Maplewood, and pediatrics in Millburn. He may be reached at themotherhood@comcast.net for comment.
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Summer 2007, Issue #2
THE LIFE & DEATH ISSUE
SELECTED STORIES FROM ISSUE #2, 2007:
* MOTHER COURAGE:
AN INTERVIEW WITH CHRISTINE MAGGIORE
The loss of any child is a devastating experience, but when a
HIV positive mother is falsely implicated in her daughter's
death it turns a personal catastrophe into a public affair. Read
the incredible story of one mother's courage and integrity in the
face of the medical patriarchy.
By KIM COLLINS
* EXPECTING LIFE
There is no pre-natal test for Faith and Hope—and no cure for
either—thank God. This Maplewood mom recounts the months
spent hoping for the best possible outcome, while preparing for
the worst.
By JANE JACKSON
* BEING OF SOUND MIND & HEART:
CREATING AN ETHICAL WILL
RABBI NINA MANDEL offers practical advice for passing on
the most valuable things to our children.
Mother Courage
An Interview with Christine Maggiore
by Kim Collins
“RELAX, IT’S ONLY INFORMATION.”
Like most people, I hadn’t spent much time thinking about HIV and AIDS. The issue hadn’t touched me personally, nor anyone with whom I’ve worked as a birth doula and childbirth educator. I had no reason to question the accuracy of HIV tests nor to contemplate the consequences of an HIV positive diagnosis. Then I was asked to interview a mother dealing with the death of her child for this issue of the magazine, and I was introduced to Christine Maggiore, author and mother of two.
I first became aware of Christine and the debate over prescribing AZT to pregnant women, due to a memorable 2001 cover story in Mothering magazine. HIV positive and healthy, pregnant with her second child (due just over a month before I was due with my second child), Christine appeared on the cover, her abundant belly emblazoned with the universal “No” symbol— a circle with a diagonal line through it—over the letters “AZT.” But somehow, I had missed the many interviews, sensationalized “Primetime” talk-shows and even plot lines in TV dramas that followed, often painting her as a lone, delusional voice on this subject for not only refusing to take the drug, but for questioning the entire HIV theory.
In preparation for the interview I started reading Christine’s book, What If Everything You Thought You Knew About AIDS Was Wrong. Immediately, I saw many parallels between her experience of being diagnosed HIV+ and childbirth in America; the lack of truly informed consent; the pervasive feeling that it’s not okay to ask too many questions or to say “No, thanks” to tests or protocols—tests that are sometimes flawed or have not been shown to improve outcomes—with matters only being complicated by healthcare economics.
An HIV statistical anomaly, Christine is a straight woman who has not abused drugs. She was a successful businesswoman who agreed to have an HIV test as part of her normal physical in 1992, at the age of 35, because it was the ‘responsible’ thing to do. Maggiore tested HIV positive and was told that she had five to seven years to live. In response, she became a public speaker and educator for several prominent AIDS groups.
About a year into her diagnosis, she retested at the request of a doctor who said she “didn’t fit the profile of an AIDS patient.” The result was a series of contradictory tests: indeterminate followed by positive, followed by negative, followed by positive. This unsettling experience caused Maggiore to question the accuracy of HIV tests and to ultimately question everything she was currently teaching people about AIDS.
In her research, Maggiore discovered studies published in the medical literature that showed HIV tests can cross react with antibodies to more than 60 different diseases and conditions including pregnancy, vaccinations and common viral infections resulting in “false positive” tests. She learned there is no universal standard for deciding what constitutes a positive result and no universal definition for AIDS.
In her book, Maggiore explains that the term “AIDS” is used to describe not one singular disease but a collection of long existing and common diseases, each with known causes—none related to the HIV virus—and established treatments. The diseases classified as AIDS change from year to year and vary from country to country.
She further explains that the probability of a false positive HIV test result, and the occurrence of the diseases grouped together as AIDS, are more common in areas where poverty—and all of the problems associated with rampant poverty—like unsafe drinking water, malnutrition, lack of basic medical care, and crowded living conditions, exist.
In spite of this information, Christine maintains that she is not on a crusade to recruit individuals away from a line of thinking that is working for them. Maggiore has said “...I can’t say the tests actually test for HIV or any [HIV] specific marker, but it might put [someone’s] mind at ease to take the test. This isn’t about deciding for other people, it’s about making information available so people can make decisions for themselves.”
Regarding treatment, Maggiore saw that people who were taking AZT and other drugs were oftentimes much worse off than those, like herself, who were healthy and drug-free. During the 18 months she served on the board of one AIDS group, “Women at Risk,” Maggiore witnessed every single woman on the board who was taking the drugs, die. AZT, the first medication given to people with HIV, was actually developed for and rejected as a cancer treatment. Its label carries a skull and cross bones warning. More current medications act by destroying enzymatic functions.
Along with others, such as acclaimed microbiology professor and author Dr. Peter Duesberg, Maggiore began asking whether the road AIDS research and treatment was careening down was really the right one after all.
No longer feeling a part of the orthodox HIV/AIDS community, she began her own organization, Alive & Well AIDS Alternatives (www.aliveandwell.org), a non-profit providing information to people who want to make informed choices about their health. As a result, Christine Maggiore became the poster child “AIDS dissident,” not a title she chooses for herself or her work.
POSITIVE MOTHERHOOD
Christine is married to award-winning filmmaker, Robin Scovill, who remains HIV negative after over ten years of latex-free sex. When she was pregnant with their first child, Charlie, now nine, she went to several OBs and was either turned away or told she had to take AZT and have a cesarean birth.
Though initially she thought the idea of a midwife “medieval,” Christine researched birth options “and decided [she] had to have a paradigm shift.” She went on to find an experienced midwife who supported her decisions to avoid AZT and other drugs, give birth normally and nurse her children. Of the experience Christine says, “I’m just so thankful…that the system tried to slap me down, and while laying there, I found some pretty cool stuff.” Charlie was born healthy in 1998. Their second child, Eliza Jane (EJ) was born, also healthy and normal, in 2001.
The family used Los Angeles pediatricians Dr. Paul Fleiss and Dr. Jay Gordon for their children, in addition to more holistic practitioners. Though aware that Christine had a positive diagnosis, the pediatricians never requested that the children be tested.
In the spring of 2005, at almost three and a half, Eliza Jane was under the weather for the first time ever with the stubborn cold going around school. She was seen by Drs . Fleiss and Gordon and then twice more by a pediatrician friend from out of state who was visiting. All three doctors pronounced EJ’s lungs clear, oxygen levels fine and diagnosed a simple ear infection.
After a few days when Eliza Jane’s ears didn’t clear on their own, amoxicillin (a common antibiotic) was prescribed by the visiting pediatrician, who examined Eliza Jane at home on Saturday, May 14. After the second dose, EJ vomited, a common side-effect of which the family had been made aware. Following the third dose, on day two of the regimen, Christine became concerned that EJ looked pale and was cold and asked Robin to call the doctor again. It was during this call that Eliza Jane collapsed and stopped breathing. Paramedics were called and revived her and then rushed her by ambulance to the hospital, where Emergency Room doctors ran exhaustive tests, including a CAT scan, two chest x-rays and a spinal tap in an attempt to
diagnose what was wrong.
After four hours in the ER, Eliza Jane went into cardiac arrest and was pronounced dead on May 15.
The EMT report said that cause of death was cardiac arrest, while the hospital attending physician suspected sepsis. With no explanation for her death, Eliza Jane was referred to the LA County Coroner for an autopsy. The initial autopsy report, filed by Dr. Changsri, found no cause of death. It did note that all of EJ’s vital organs were grossly enlarged with circulatory fluids, which would normally indicate a toxic reaction. After ten days of testing and no identified cause of death, the coroner’s office asked Senior Deputy medical examiner, Dr. James Ribe, to conduct an exam.
Four months later, Dr. Ribe finalized his report with the conclusion that EJ had died of AIDS-related pneumonia.
The family was alarmed and surprised at this conclusion, given that EJ’s initial autopsy report and x-rays had shown no physical evidence of pneumonia. Learning that an investigator from the LA County Coroner's office had asked Dr. Fleiss if he knew about Maggiore’s book and her position on HIV, caused Christine and Robin to speculate that Eliza Jane’s death was viewed as “AIDS by association.”
According to published reports in several Los Angeles newspapers, Dr. Ribe has been the subject of several reprimands by the District Attorney, and also subject to credibility challenges over his autopsy conclusions and court testimony in other cases.
Looking for answers, the family arranged to have Dr. Mohammed Al Bayati, a board-certified toxicologist and pathologist, review EJ’s autopsy report. (Dr. Bayati is on the advisory board of Alive & Well AIDS Alternatives, Maggiore’s non-profit organization.) He concluded that EJ had died from a fairly rare form of delayed anaphylactic shock in reaction to the antibiotics. Supporting his conclusion was the amount of displaced fluids in EJ’s body, consistent with toxicity. In his opinion the sepsis caused multiple organ failure culminating in cardiac arrest.
A media storm ensued when Dr. Ribe’s unreleased report was leaked to The Los Angeles Times. The article announced that Maggiore and Scovill were being placed under criminal investigation for negligence. Anticipating custody of son Charlie being jeopardized, they had him tested three times—once at home, once with Dr. Fleiss and once at Dr. Gordon’s lab—and he was found to be HIV negative every time, just as Robin was. Despite three negative test results and a record of perfect health and school attendance, the Department of Child and Family Services stated they would take custody of Charlie unless his parents agreed to a fourth test. After a fourth negative test, DCFS kept the case open for several months before investigators were satisfied that Charlie was healthy and safe.
The original autopsy report from the LA coroner’s office stated that an HIV test was done but did not include the results. Despite numerous requests by Maggiore’s attorneys for lab evidence of her daughter's HIV status, the coroner’s office has refused to provide this “absent a subpoena.”
Regarding the cause of her daughter’s death, Maggiore has said, “Essentially, the way it’s been explained so far is that my daughter was remarkably immune suppressed but managed somehow to show no signs of that during the first three years and five months of her life. Then, suddenly and unusually, she developed an unseen, undetected case of AIDS pneumonia that even at her autopsy couldn’t be found. There’s a leap going on here that I’m not prepared to take. I want more information.”
MOTHER COURAGE
For many touched by HIV, having one’s orthodox assumptions challenged —what we have come to regard as givens in our national life—can be been life-changing and even life-saving.
Christine Maggiore and her family continue to fight to clear their names, having brought a lawsuit against the LA County Coroner’s Office. Friends help maintain a website, www.justiceforej.com, where reports, interviews and updates can be found. Hate mail and scathing blogs have been balanced by support from celebrities, like HBO’s Bill Maher and the rock band Foo Fighters, academics, doctors, and average people just touched by the story.
Christine remains healthy fifteen years after her original positive diagnosis—without the use of AIDS drugs. She and Robin continue their work and are upheld by a community of friends and neighbors as they raise their son Charlie and remember their brief, but blessed time, with Eliza Jane.
Underneath the story of Christine’s journey as a person who has tested HIV positive and her advocacy work on behalf of all those testing positive there is, finally, the story of a mother losing her child.
Where does she get the daily courage to continue her work and her life? Below is a small portion of my interview with Christine at her home in Los Angeles, conducted over the phone and through e-mail.
TMH: Losing a child is hard to think about or imagine. What keeps you going? What keeps you sane?
Christine Maggiore: Survival went from a moment to moment occurrence—I can’t even use the word decision as it happened without my will or desire—to an hour by hour, and then day by day struggle, with blinding pain and bottomless despair. At first, it felt like the only reason I didn’t die was that my heart kept beating. It was very hard to want to stay alive. The beautiful spring days following EJ’s death were like an assault. Nights were torturous. I’d sit outside for hours in the darkness, feeling hollow and alone. For weeks, I couldn’t breathe.
But my son was my north star and my husband was like my compass, they kept me from becoming lost in sadness. And we had so much help from friends, some of whom we didn’t even know until after Eliza Jane died. For many weeks, our house was always full of life and love. People brought flowers and food, stayed late into the night, checked on us every day, made us
dinner, made music, helped us laugh, let us cry, and shared stories of their own losses and survival. Robin, Charlie and I held on to each other while they held us.
When the media storm and police investigation started up four months later, we had a shelter of love and friendship built on the foundation of our truth. As time went on, I met intelligent, capable, compassionate mothers who had also lost children. I found them through friends and teachers at our school rather than in a support group. Knowing these women and their stories has helped me to understand that I am not on this path alone, that I, too, can reconstruct my broken heart and survive. I also understand that the absence becomes its own presence, that the pain will always be there and that I will learn to live with it.
Books have been of great help and comfort, in particular On Grief and Grieving, by Elizabeth Kubler Ross, Journey of Souls, by Dr. Michael Newton, and Expecting Adam, by Martha Beck. Since I couldn’t speak to any of my friends about Eliza Jane once the police investigation began and I couldn’t afford a therapist, I found a counselor who allowed me to defer payment. And here’s an example of some of the magic EJ brings to my life: after several weeks of seeing this therapist, I learned she lost a four year-old son named Charlie who was born in December like Eliza Jane, and who died in May, the same month as EJ. I also learned that she specializes in cases involving legal and police matters. I found the perfect therapist by chance, by taking a chance. Some words of advice given to me: Be open to the magic of life and it will find you.
TMH: You have stated in other interviews that you have no regrets and have not questioned your convictions as a result of EJ's death. This speaks to me of incredible personal strength—where do you think this strength comes from? Did you always have it?
CM: Regarding strength, I think we can all call forth tremendous strength and power when we need it. Finding that strength and power when your heart is shattered and everything seems impossible is the hard part, but it’s always right there. I think you have to make yourself step forward despite the fear and the darkness with the faith that the path will be there and light will come.
I don’t believe I have “convictions,” I believe I have knowledge about HIV and AIDS that remain open to challenge and correction. What tests my strength in this regard are people who make cruel comments and uninformed statements about my daughter’s death and, after speaking out, won’t engage in conversation or even answer questions. If my daughter’s death has proved anything to me about HIV and AIDS, it’s that reason and even decency are utterly absent from most discussions on these topics.
As far as regrets, I do not regret for a second that I declined the dictates of the AIDS mainstream with regard to toxic drugs, C-section births and formula feeding. As you may know, the coroner’s office has refused to provide us with laboratory evidence of Eliza Jane’s HIV status and, despite ideas about so-called HIV transmission, my son Charlie and my husband Robin both test negative. It’s important to understand that they took tests only after it became apparent that our lack of participation in mainstream medical practices was being viewed as criminal behavior. I still have seen no indication there are HIV tests actually approved by the FDA for the specific intended purpose of diagnosing infection with HIV or any tests that have been
validated by the direct isolation of HIV from positive testing individuals.
I absolutely regret not recognizing that EJ was having an adverse reaction to the antibiotic and not being able to save her.
TMH: Growing up, who influenced you to think so independently?
CM: From an early age, my father encouraged us to stand up for what we think is right, even if we’re the first or only ones standing. I think our children learn a lot by seeing us help, speak up for and protect ourselves and others, especially when it’s easier to be quiet, give in or turn the other way. Another valuable lesson my Dad taught by example: Be open to change and be able to be wrong.
TMH: Do you view your journey since your original HIV test as a blessing, curse or neither?
CM: I think it’s a blessing any time we learn, grow, create new possibilities, and connect and share with others. Through my work in this area, I’ve met so many remarkable people and have had so many extraordinary adventures, like spending time in South Africa with President Thabo Mbeki and with Winnie Mandela and her family. Charlie and EJ’s first experience of snow was when I did a TV show in New York. Charlie loved our recent trip to Mexico City, where I filmed three news segments for national television…testing positive has made for a different life and more challenging life than the one I expected but a full and beautiful one, nonetheless.
TMH: Professionally and personally, has the death of EJ resonated in terms of how others with whom you work(ed) closely treat you? Have any sources of support disappointed or pleasantly surprised you?
CM: Professionally, I haven’t encountered any person or group whose view of me became tainted by my daughter’s death. The people and groups from any area of my life that disparage me are ones with no direct knowledge of me or my family. So, while it hurts that people talk or write about me as if I’m a fool or criminal, I recognize that those who do so are not well informed.
Countering that is all the support and encouragement from people I’ve never met who reach out to me after discovering the media response to my daughter’s death. One example is an invitation to speak for an association of journalists in Washington, DC. They think my experience exemplifies a modern day version of a witch-hunt.
TMH: I assume you and your husband, Robin, have made decisions together yet he is seldom mentioned in regard to your health decisions and EJ’s death. Why do you think the “story” is so focused on you, the mom?
CM: I think the stories focus on me for obvious reasons like I’m the one who tests positive and lives in health without the supposedly necessary, allegedly life-saving medication, and I’m the one who wrote the book and birthed the children, and I believe the focus is also singular for subtle reasons such (as) suggesting I stand alone, that I am an anomaly, unsupported personally or professionally or scientifically, which is not at all correct but creates more drama and poses far less challenges to mainstream beliefs.
TMH: In terms of protecting our children against allergic reaction to antibiotics, what have you learned?
CM: I learned too late that there are over 70 citations in the medical literature to adverse reactions caused by amoxicillin—including death—and that amoxicillin is among the top five drug reactions that prompt emergency room visits in the US according to a recent news article that appeared in the Los Angeles Times.
TMH: I’ve read your advice to pregnant, birthing and nursing women who may be uninsured or needing public assistance and how that can complicate matters. What advise do you have for woman and families not facing those challenges, but who can expect to have less and less choice about HIV and other medical testing/medical mandates?
CM: Become informed and stand up and speak out for informed choice. It’s the only way to maintain choice and prevent mandates for testing and medication for a variety of questionable conditions.
TMH: I understand that you are unable to speak freely about your pending lawsuit against the Coroner’s office, but is there any new information about the legal situation that you can share?
CM: Here’s what I can say: my husband and I have filed a law suit against the LA County Coroner’s office and deputy coroner Dr. James K. Ribe, whose conclusion that Eliza Jane died of AIDS stands in opposition to the physical evidence. In investigating our case with the LA County Coroner’s office, we discovered the cases of three people currently serving life sentences because of Dr. Ribe’s dishonesty. Our goal [with our law suit] is to shine a cleansing light on the LA County Coroner’s office in order to arrive at truth and justice for our family and for those three people wrongly convicted of crimes they did not commit.
TMH: If you could say just one thing to readers about HIV and AIDS, what would that one thing be?
CM: There is so much more to the AIDS issue than what we think we know and, unfortunately, the scope of acceptable discussion has narrowed to the point of strangulation of new ideas and different possibilities. Solutions to problems begin with open investigation and dialogue and are created through access to information. AIDS is a problem with no safe and effective solution and no open investigation or dialogue. I think we need to start from the beginning together to create solutions that can truly be of help to people.
EDITOR’S NOTE: On March 22, 2007, legislation was proposed that, if enacted, would make NJ the first state to mandate that all pregnant women and babies be tested for HIV. The legislation currently provides for an opportunity to opt-out of testing; women and families would have to put their refusal of testing in writing.
For more information on Christine Maggiore and this topic, go to:
Alive & Well AIDS Alternatives
www.aliveandwell.org
www.justiceforej.com
Mothering Magazine
www.mothering.com
See back issue NO. 108, SEPT/OCT 2001.
The Group for The Scientific Reappraisal of the HIV/AIDS Hypothesis
Toll free: 877-256-6406
www.rethinkingaids.com
email: editor@rethinkingaids.com
HEAL (Health Education AIDS Liaison)
New York City 212-873-0780
http://healaids.com
The National Vaccine Information Center: Founded 1982 by parents of vaccine-injured children:
703-938-0342
Kim Collins, also known as DoulaMomma, lives with her husband and three sons in South Orange. A “reformed” attorney, she now teaches childbirth classes, counsels on birth options, creates belly casts, and works as a birth doula. Reach her at doulamomma1@hotmail.com.
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Expecting Life
by Jane Jackson
After a grueling two-hour ultrasound, the doctor turned to us and said, “This doesn’t look right. I may be wrong, but I think it’s a diaphragmatic hernia.” Already exhausted and sick from the exam, I now felt incomprehension and dread. My heart beat as if it were trying to escape from my chest. I was stunned, full of questions and, above all, afraid.
Pregnancy is an anxious time. Seemingly endless tests and screenings remind us that there are no guarantees. Web sites, books, friends, even strangers, dispense prenatal advice. The media reports frightening accounts of hidden environmental dangers. Despite all this scary information, most of us never imagine the worst—that our babies will die—but it happens.
I certainly had not thought about infant mortality on that beautiful fall day. The previous year—which included 9/11, a miscarriage and my husband’s skin cancer—was tough. In the great cosmic scheme I was due for some good news and I knew with unshakable confidence I would get it.
I was wrong. Our son’s intestines were not in his abdomen, but in his chest. His heart was growing on the right side, not the left and his stomach was elongated. The doctor was fairly sure it was a diaphragmatic hernia, but wanted us to undergo more tests.
The next days were a blur as the doctor rushed to introduce us to a genetic counselor, pediatric cardiologist and other specialists. The genetic counselor provided us 10-year-old articles which, at their most optimistic, depicted grim outcomes. In the hospital’s cardiology department, I passed several children hooked up to machines looking sad and bored. The fetal echocardiogram showed no functional issues with the heart, it was just in the wrong place. This, I thought, must be good news. No, the cardiologist informed me. It just reduced the likelihood of chromosomal abnormalities. He went on to say that if my son lived, he could be very, very sick. Both the cardiologist and the genetic counselor urged us to consider terminating the pregnancy.
But I still had many questions: How sick are the survivors? Are they cognitively delayed? What happens at birth? How many survive? Would my son be like the children I had seen in the
cardiology area? What could I do to help him? Suffocating from pressure and confusion, I kept putting my hand on my belly. I didn’t know what else to do.
While I saw doctors and tried not to cry, my husband contacted two good friends, a pediatrician and a neonatal intensive care unit (NICU) nurse. With their help, we learned that congenital diaphragmatic hernia, or CDH, occurs when the diaphragm does not fully form during the first trimester. Abdominal organs such as the intestines, stomach and liver can move into the chest,
compromising lung growth and function. It’s life-threatening.
When our son was diagnosed, reliable methods for predicting survival did not exist. Journal and Web articles reported rates anywhere from 40% to 80%. After a month of digesting this information, we realized there was hope, but it was critical to deliver in a hospital with a well-equipped NICU and an experienced team of pediatric surgeons. Fortunately, we found an excellent center for CDH delivery, care and surgery only 45 minutes away.
That first month, I tried to stay focused and calm. There was hope, but no guarantee. Grasping the full medical meaning while fighting fear is one of the most difficult things I’ve ever done. Still, it felt good to be actually doing something. I met with the surgeon, whose basic confidence impressed me, and changed my OB care to the high-risk group at the hospital. I endured more tests and planned the delivery with my doctor. This was all I could do for my son as there are no prenatal treatments for CDH.
Once we had settled on the surgeon, the hospital and my OB, I had three months to wait. After all the initial chaos and frenzy, everything became very still. I felt the baby moving and desperately savored every kick. I learned not to imagine myself holding him or playing with him. I ignored the future beyond delivery.
Instead of preparing a nursery or buying clothes, I adopted a dog, whose care fulfilled my nesting urges. Instead of reading about breastfeeding, infant care or sleeping through the night, I read mysteries and light novels. I tried to keep my mind occupied with non-baby thoughts. I almost felt like I wasn’t really pregnant, except when the baby moved and reminded me. While hoping for the best and preparing for the worst, I tried to telegraph a lifetime’s worth of love to the baby I carried.
My family, friends and the few co-workers I told were incredibly supportive and sensitive. Without their support, the well-intentioned comments and good-natured ribbing of strangers (“You think you’re tired now? Wait till he’s screaming at two in the morning!”) would have been unbearable.
I joined an online CDH parents group. Through them, I learned how unique each case is. For instance, some babies have “holes” or hernias on the left side of the diaphragm, others on the right. The hernia size and number of organs in the chest vary too, affecting how much the lung’s space is impacted. What I didn’t know was that some babies with tiny holes didn’t survive and some babies with tiny lungs did.
I read story after story and rejoiced when the Web site reported that a baby stabilized and went home—and mourned when a family had to say goodbye.
The weeks crawled by. I managed to keep the sadness at bay and the hope alive. I functioned at work, spent time with friends, prayed, and walked my new dog. Often during a visit to the high-risk OB, I would hear sobbing in the adjacent exam room. Then the midwife would rush in and say something like, “I’m so sorry we’re running behind, I’ve just had to deliver some bad news.” Appointments like this kept me from getting too comfortable.
I started attending a healing service at a church near my office. It was a short lunch-time ceremony that rarely had more than ten congregants. I never told anyone there why I came, but I think they knew it was the baby. They were kind without prying. Around the same time, I started to think about hymns I would request if we needed to have a funeral.
Four and a half months after the initial diagnosis, it was time. While waiting to be induced, the baby became distressed, and so he was born by C-section. In the operating room, as the anesthesia took effect, I began to sob uncontrollably. I hadn’t cried in months, but now I couldn’t believe the waiting was over. Moments separated me from what could be the biggest trial of my life. I had imagined every scenario from my son being fine, to the most horrible in which I held him as he passed away.
After operating for what seemed like three minutes, the doctor said, “Okay, he’s almost here. I’m gonna hold him up for a split second so be ready to look.” And suddenly there he was: red, wrinkled, tiny, and trying to cry. I held the moment as long as I could. He was beautiful. We heard two faint cries as he was rushed from the room. This was a good sign. It meant he could actually draw breath. As he was leaving the OR, the doctor asked, “What are you calling him?” My husband and I answered together, “Will,” as in “strong willed” and “will to live”.
Our doctors had told us they would perform the repair surgery when and if he stabilized. If he survived the birth and the surgery, we could expect six to eight weeks in the NICU, reflux, feeding problems and breathing issues. I was prepared for this scenario. I was prepared to have my child come home with a feeding tube or oxygen. I was prepared to administer reflux medications. I was even sort of prepared to say goodbye. But I was not prepared for what actually happened.
Will stabilized very quickly. He was put on a ventilator and given extra oxygen but was able to handle regular air by the second day. I only saw him briefly the day of his birth. He had IV tubes and wires attached all over his tiny body. His stomach was flat, almost svelte and he was barrel-chested. This is common with CDH babies. I thought it would be horrible to see him this way, but I actually found it reassuring, knowing he was getting what he needed.
The next day we held a baptism in the NICU with several nurses taking part. Our nurse seemed to think Will would do well. She had been working in the NICU for over 20 years and had seen many CDH babies. She said Will was a fighter.
She was right. The surgeon, pleased with Will’s progress, moved the surgery date up. He and his team came in on a Sunday to do the repair. Will recovered quickly enough to be moved to a gentler version of ventilation, which allowed us to see more of his face. By the sixth day, we were able to hold him for the first time. A miraculous eleven days after he was born, our son was discharged with no tubes, no oxygen and eating well. It was the best possible outcome. The surgeon, the doctors and the nurses couldn’t believe how well Will had done. We took him home and four years later our son is a normal young boy with nothing to show for his irregular and scary start in life except for the long scar on the left side of his chest.
*We are indescribably blessed to have our son. We recognize his story is unique among CDH survivors and often think about the parents and children who face longer recoveries, more challenges, or the unthinkable. Our thoughts, prayers, and best wishes are with them always.
Jane Jackson is a former software engineer who lives in Maplewood and spends her time at home with her two wonderful children. Reach her at themotherhood@comcast.net.
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Being of Sound Mind & Heart:
Creating an Ethical Will
by Rabbi Nina Mandel
A young couple sits at their dining room table late at night contemplating the unthinkable: What will happen to their children should they both die? They know they need to choose a legal guardian but are having trouble choosing among their family and friends.
Who would raise their children with the appropriate values, discipline and compassion? They don’t want to burden aging parents. One sibling is in the military. When another sister is suggested the response is: “She’ll probably sell them to the highest bidder!”—and the laugh track plays. Another sit-com takes on the issues of the day.
More and more often this story-line is played out: young, neurotic, vaguely neglectful yet overbearing parents try to figure out which of their less-than-perfect friends should be named as guardians.
Certainly, finding someone to look after your children is an essential decision that should be made early and reviewed periodically, and most people understand the importance of a will. However, there are other important preparations that should be taken into account when preparing for worst-case scenarios.
Very few people find it easy to contemplate their own death, let alone the answer to these questions: How long would I want life-support to continue if I am critically injured? Who has the ultimate authority to end medical intervention if I can’t offer an opinion? While the concepts of living wills and advanced directives are becoming part of medical vocabulary, not enough people have “gotten around to” creating these documents for themselves. However, if you find thinking through these options to be difficult, imagine how hard it will be for your children.
Consider Terry Schiavo’s case. Even though this woman had been in a coma for more than a decade and had planned with her husband for end-of-life decisions, stopping medical intervention for her became a topic for contentious debate among her family, medical ethicists, theologians, and even the U.S. Congress.
Shouldn’t an advanced directive have prevented this?
Clearly a list of treatment dos and don't is not a sufficient mechanism in and of itself. What’s needed—and what is so clearly lacking—is input from the patient herself. In hospital rooms and hospices across the globe, friends and families make decisions by saying: she/he would have wanted it this way. But how do they know?
It is vitally important for all adults to do this kind of planning—whether you have children or not and whether you are
partnered or not. Our social system favors the heterosexual, married couple with children: spouses are next-of-kin,
children’s wishes are taken into account and even simple things like visiting in the hospital are bound by this definition of family. If you fall outside this “norm,” you need to be very specific about what you want and who you want to be part of the decision-making if you are unable to do so.
The most effective advanced directives (living wills) are the ones that reflect your personal ethics and values. “The Five Wishes,” (www.agingwithdignity.org) walks you through questions about | | | |
