Monday, June 21, 2010

Responses to Survey on Unnecessary Medical Treatment

The Safe Patient Project is soliciting stories of medical overtreatment and medically unnecessary treatment. The Consumer Union asks:
Have you or a loved one had tests, surgeries, procedures or medications that you thought were unnecessary? If so, we would like to hear your story. We'd also like to know if you declined tests or treatments offered to you that you thought were unnecessary and found a medically appropriate alternative. Thanks for taking the time to do this. Your personal experience can really help us stop unnecessary and inappropriate medical care in the future, and improve the quality of care for patients.

One of the the areas in which medical overtreatment is done most is in maternity care. Its a multi-billion dollar business where each delivery costs almost triple than it otherwise could. There is evidence to suggest that childbirth in a hospital after a low-risk is overtreatment. Midwives are able to safely assist women in birthing their babies in their homes in the vast majority of pregnancies at the fraction of the cost. Choosing to birth without a medical attendant is also a valid option given preparation, planning and access to emergency services.

If you, one of my readers, have a story to tell about unnecessary medical treatment during your child's pregnancy, labor and birth, the Consumer's Union Safe Patient Project is giving you the opportunity to tell about your experiences. If your experiences were traumatic reporting on it may be triggering. There is a chance that your story will make a difference in maternity care and you'll face better and more appropriate treatment the next time you have a baby. You may also be making maternity care better for other mothers and their babies. The URL for the survey is:

The following is the story I told. I'm including my responses to the question. I tried to explain as clearly as I could that I feel like the admission to the hospital in early labor was medical overtreatment. I recognize that in the big picture and in comparison to other birth experiences I may have had, its a small thing. But as I learned, it can and did have strong consequences.

1. Question - What type of medical overtreatment did you experience?

Answered: Other

2. Question - In what kind of facility did the event occur?

Answered: Hospital

3. Question - Describe your medical overtreatment experience in your own words (the space below allows you to include as much detail as you like):
I was admitted to the hospital in early labor (38 weeks pregnant) where the midwives proceeded to attempt a induction. This strategy is sometimes called a "backdoor induction" because it misleads the pregnant patient into believing that her labor is more progressed than reality and that a hospital admission is warranted. In response to this question, I'm considering the hospital admission medical overtreatment. There was no need to be admitted to the hospital at that time. The result of the admission was stress in response to the coercion used by the midwife on duty who attempted to get me to consent to an induction that was unnecessary. I felt bullied, manipulated and scared for my health and my unborn baby. I experienced PTSD as a result from what I feel like was fighting off a potential rape of my body.

4. Question - Did you report this incident to your state's Medical Board or other licensing agency?

Answered: Yes

5. Question - If yes, what was the Medical Board or Licensing Agency response?

Answered: None

6. Question - Your experience or that of a loved one resulted in:

Answered: minor injury or minor disabling condition

7. Additional Comments:
I explained above that I experienced PTSD as a result of overtreatment in my pregnancy. Often the psychological response is not classed as "morbidity" but considering how debilitating it was for me, I consider it a minor condition that had far reaching effects on my life. I still suffer the effects of the emotional trauma but felt recovered enough to not longer need treatment after 1 year.

8. Question - If you or your loved one experienced medical harm from overuse, how long did it take to fully recover from the incident?

Answered: More than a year

9. Question - Did the medical professional fully inform you of the risks of the procedure or treatment.

Answered: Did not provide full information about the risks

10. Question - Please describe additional information that you received about the risk or found out after the procedure from another source.
I was not informed that the risk of early admission to the hospital was increased intervention that could lead to a hasty attempt at induction which is associated with a higher likelihood of c-section, mortality for mother and baby, respiratory distress for the baby and NICU stay. If I had know that quickly, upon admission to the hospital that an induction of active labor would have been suggested, I would not have consented to being admitted.

It was later that I found out about backdoor induction from a labor and delivery nurse who blogged about it at:

11. Question - Were there unanticipated costs associated with the medical procedure or treatment?

Answered: Yes (therapy, an extra day of hospitalization)

12. Question - Did your health insurance company pay for expenses associated with this care?

Answered: No (not the therapy)

13. Question - If you declined medical care you thought was unnecessary, what tests or treatments were offered to you that you declined?

Answered: Other

14. Question - Please describe why you thought the tests or treatment were unnecessary and declined them.
I declined the induction that the midwife attempted to force on me. She lied to me telling that she wanted to augment my labor. I after learned that using pitocin and breaking water before 4 cm dilation (and active labor) is a complete induction.

I also declined the morphine and sleep aids that I was offered. I felt that the midwife was attempting to coerce to me take them and that she did it with the intent of knocking me out so she wouldn't have to deal with me. When a woman is coping well with her established labor pattern and is not expressing any exhaustion or discomfort, the offer for pain relief or sleep aid is unnecessary.

15. Did you seek a second opinion?

Answered: Yes

16. Question - What did you do?

Answered: Pursued another treatment

17. Additional Information:
Because I was told that there was a good reason to be admitted to the hospital, I was very confused why I was then rudely told to leave the hospital when I declined the offered procedures and drugs. I continued laboring and progressed to active labor after being kicked out of the hospital for my lack of cooperation. I was then afraid of going back to the hospital fearing that I would be told to leave again, forced into intervention I knew to be unnecessary or that I would be lied to regarding the health and well-being of my baby.

In the hospital, I considered trying to switch providers to one of the OBs on staff and I learned that the OB supported and was going to sustain the midwife's plan for my labor. When I was told that I would not consent, the OB told me to leave.

At home I considered the options of not seeking further treatment or consulting with another hospital or maternity care provider. Because I was in labor and the baby would be born within hours, I could not bring myself to go to a different hospital and provider that I had not planned on working with. I was very fearful that if I even tried another hospital would not admit me. That left my other option of giving birth at home unattended by a medical professional or calling a homebirth midwife to attend me which I did not think a midwife would be willing to do without a prior working relationship with me. I was worried about the legal implications of birthing unassisted and thought perhaps my child could be taken away from me because of my neglect is obtaining proper medical attendance for his birth. I felt like my only option was to return to the hospital where I had been treated badly and hope for the best in spite of my fear.

Upon returning to the hospital, labor progressed easily and I birthed my baby unmedicated and without further intervention within 6 hours. By that time the midwife who had troubled me the day before was off shift and I didn't have to deal with her anymore. No further attempts to alter my labor were made though AROM was done with my consent. It was unnecessary at the time too but I did consent to it and did not feel pressured to do so.

In effect, the treatment I pursued was "the tincture of time." I knew that a first time labor could be slow to establish an active labor pattern that with the supportive emotional and physical assistance I could bear the labor as it progressed and that in time, the baby would be born without difficulty.

My story does not highlight the most egregious ethical lapses of a maternity care provider but yet, her treatment and tactics still were not right, not in line with the midwifery model of care and unfortunately indicative of the greater obstetric culture where its just fine for providers to withhold and manipulate information to hurry births along. I can only speculate on the motivations for why they do it and even with an explanation, the "care" cannot be excused. I truly hope that my story and others will have an impact on how patients are treated and that they are given the respect they deserve to make completely informed decisions.

Sunday, June 20, 2010

A hole in the heart, a hole in the family

A little dark haired girl is wearing purple sweatpants with matching sweatshirt. Her dad, wait that's my dad but much younger, so the little girl must be me, is holding her hand as they walk through some sliding electric doors into the dim light of a corridor with an information desk and waiting rooms off to the side.

Why would this be my first memory?

I was not quite two years old. It was September of 1986 so I was 22 months old. The only reason why I know this is because that's when my brother died. Those doors opened to the hospital where my mother learned that her 38 week gestation baby was dead and that even though labor had started, she would be birthing a stillborn. Somehow, I picked up on the emotions of my loved ones and knew something was very wrong and that memory stuck.

Later my mom told me that her loss was so great that her desire to live only remained because of me.

Growing up, the explanation for why my brother died was unclear. As a teenager, I learned that he had a heart defect that, obviously, was not compatible with life. I heard different things: he had a hole in his heart, one of his arteries was not connected correctly and his heart formed inside out.

I didn't know that when I was 10, my dad had requested the medical records as well as the autopsy report. I also didn't know that I would find those records when I was cleaning out my mother's garage this summer.

Cause of death: Complete transposition of the aorta and pulmonary arteries.

Of course, I didn't know much about what that meant so I set out to learn.

I learned this defect is most commonly called Transposition of the Great Arteries or vessels. What is means is:
Babies with TGA have two separate circuits -- one that circulates oxygen-poor (blue) blood from the body back to the body, and another that recirculates oxygen-rich (red) blood from the lungs back to the lungs. Without an additional heart defect that allows mixing of oxygen-poor (blue) and oxygen-rich (red) blood, such as an atrial or ventricular septal defect, infants with TGA will have oxygen-poor (blue) blood circulating through the body, a situation that is critical. Even with an additional defect present that allows mixing, babies with transposition of the great arteries may not have enough oxygen in the bloodstream to meet the body's demands.(1)

The first question I had after obtaining that information was how did he even live as long as he did. This diagram illustrates how there is some mixing of blood in the atria (upper segments of the heart).

I also learned that in most cases TGA is not determined until after the baby is born and they are blue and floppy without pinking up over time and with treatment. This was a surprise to me because here I am learning that most babies survive birth with this condition and my brother did not.

It can be corrected early with surgery and most babies with the condition survive and unfortunately our family didn't get that opportunity. I perhaps more so than other young children have felt his loss because with his death I became and remained an only child. I often felt the hole in our family from not having a sibling and knowing that we came so close and suffered such a devastating loss that made it so.

I've also wondered if my parents could have known prenatally that the baby had a defect that was life threatening. My mom had told me after I became a mother that she had not had an ultrasound with my brother's pregnancy because it hadn't seemed warranted. In 1986, it hadn't yet become standard practice to conduct the 20 week anatomy check.

Could a routine mid-pregnancy ultrasound have caught it?

This question of routine ultrasound is still be discussed hotly in the scientific literature, as well as among expectant parents. Each couple or mother has to come to that decision for her/themselves and it will often be based on the values and perception of risk for the individuals.

My mom given her knowledge at the time decided to avoid a sonogram during that pregnancy, and none of the doctors pushed for it. Its not like now where its the exception to forgo the 20 week anatomy scan. Its within a family rights to choose one or the other. I've had to consider it myself and working through this experience gives me some more insights into the decision making process.

From what I've been able to learn about TGA, early ultrasound can detect it (2). A study using ultrasound to detect TGA prenatally started in 1986 and out of 68 fetuses with suspected TGA, 57 truly did (3). That's a pretty good detection rate. And according to the authors, mortality rates were lower when it could be anticipated before birth. They caution however that the technician must be adequately trained to detect fetal heart anomalies and the emotional upheaval of knowing ought to be weighed against nature taking its course.

I am now picturing the high-risk hell that my mother may have experienced in knowing early that my brother had this defect. Maybe it would have been discovered at 20 weeks and biweekly biophysicial profiles and non-stress tests would have been conducted to give him time to mature but then to end his gestation at the first sign of distress. If he died in utero between 32-34 weeks, that is a really early premature baby and in his case, one in acute need of open heart surgery to repair the defect.

A high chance of death anyway, a long NICU stay, recovery from a repeat c-section with a toddler at home, emotional trauma from the fear and horror of parenting a sick premie, the stress of the hospital bills--that could have been my family's alternate reality.

I've spent enough time at Solace for Mothers to know the pain, suffering and difficulty that comes from a birth experience like that. Knowing myself the trauma that comes from a negative birth experience, I can't choose which I would prefer. I know, from observation and from my own loss, the grief that comes from the loss of a stillborn baby. Would I choose that because its familiar? Because I recognize that the laws of nature are a crapshoot and sometimes babies die? That maybe facing his loss the way it happened was going to somehow be better than losing him after the trauma of a premature birth? The chance that my mother herself could have died given the increased risk of maternity mortality for cesareans over vaginal birth?

Of course, a question I've asked myself is what was the cause of the defect.

I've blogged before about the possibility that my mom's previous c-section could have contributed to my brother's stillbirth, though I have not found any evidence suggesting that a prior c-section can predict a congenital heart defect. Environmental contaminants have been named as a possible explanation (4)(5). In talking with my mother, I learned that she remembers smelling the solvents in the inks used in her workplace during her pregnancy with my brother. I already found the work of organizations like Environmental Working Group and Pesticide Action Network compelling but this further adds to my awareness of the effects of environmental contaminants. Not only do I find their ubiquity insidious but I am angered at the cover-ups employed to deny the facts and the lack of regulation and ethics that have caused so much damage already that the public is only beginning to learn about now.

I have to remind myself though, "Most of the time this heart defect occurs sporadically (by chance), with no clear reason for its development" (6).

And of course, nothing changes the reality. My mother continues to cling to me for her hope and happiness and I'm learning what being a sibling is like through watching my children. Comfort is found in the plan of salvation as taught by the LDS Church that my brother belongs to our family for eternity and that I will have the opportunity to know him in the next life. I already sense that my father, upon his death, was welcomed to the spirit world by his son.

(1) Children's Hospital Boston "Transposition of the Great Arteries"
(2) Role of Ultrasonography in Early Gestation in the Diagnosis of Congenital Heart... Abu-Rustum et al. J Ultrasound Med.2010; 29: 817-821
(3) Detection of Transposition of the Great Arteries in Fetuses
Reduces Neonatal Morbidity and Mortality in the journal Circulation 1999;99;916-918

(4) Having Faith: An Ecologist's Journey to Motherhood by Sandra Steingraber
(5) The Body Toxic by Nena Baker
(6) Children's Hospital Boston "Transposition of the Great Arteries"

Saturday, June 19, 2010

Before you were formed in my belly, I knew thee

This was originally published as a response to a question asking about pre-birth experiences of knowing and sensing a child within a mother's body. I was reminded by the verse in Jeremiah "Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee."(Jeremiah 1:5). And its just fitting to think about this on the eve of Father's Day.

A couple of months before my oldest was conceived, I had this strong impression that the time was right to start the process of welcoming a baby into our family. I picked up a copy of Hypnobirthing because I had known for years that I was going to learn the technique for my preparation for birth. I prayed to know if it was right to try to conceive and felt it was.

It was not our plan at all however to try to get pregnant at that time. We had wanted to wait until we moved to our new city (just a few months away) and my husband got settled in his first year of graduate school before even attempting. Because of this, my husband was very resistant to my impression and when he prayed about it did not feel the same as I had.

Then he was surprised when I learned I was pregnant a couple of months later. For me, even though the news was unexpected, I wasn't really surprised because I had already been told that a baby was ready to come to us. Its this story that merits a complicated answer to the question, "was this a planned pregnancy?"

There was magic around us when he was conceived, and a power greater than the two of us lead us forward. We felt drawn to each other in that time and place and under those circumstances. It wasn't likely that I was fertile at the time and yet it happened, in joy and ecstasy.

As soon as I was pregnant, I knew it was a boy so I was not surprised to find out I was right. Even years before, I had had dreams of breastfeeding a baby boy. It had felt so real that as a teenage girl, I was shaken by the seeming realism. Before pregnancy, I had felt for a couple of years that my first baby would be a boy. We knew very early in our marriage that he would be given my husband's middle name.

And so it was. He is now a vibrant, strong-willed, precocious three year old little boy. He has given my life a passion, direction and drive that it was missing before and laughter everyday. Without my little boy and the experiences of his birth, I would not have become the ferocious mama I am today working for the protection of mother's and babies rights in our country. He has been teaching me balance as well as through his pregnancy, infancy and toddlerhood, I started and completed a master's degree, helped create a national then international non-profit organization and assisted the forward progress of a national service for expecting families.

A song that I feel characterizes the connection I felt with my little boy before his birth and how his being transformed my life is from the Shrek soundtrack, "It is You I Have Loved."

As a newborn, I rocked him in my arms and sang the lyrics to him and felt that the hole that had been missing in my life had been filled.

Do Birth Workers Know What Women are Reading?

Rixa at Stand and Deliver blogged recently about how obstetricians come to their beliefs about homebirth which reminded me of a question I asked myself a few months back.

Do obstetricians and L&D nurses know what women are reading about birth?

And, if they did, how would that change their practice?

Beyond the texts recommended by obstetricians and What to Expect When You're Expecting, it appears to me that many women planning hospital births are reading information on natural childbirth with books like:

Ina May's Guide to Childbirth
The Birth Partner
A Thinking Woman's Guide to a Better Birth
Gentle Birth, Gentle Mothering
My Best Birth
The Birth Book
Birthing From Within
Spiritual Midwifery

A common thread of these books is arguments against using obstetric intervention through replacing interventions with simple strategies employed by the mother and her support people. Most of these strategies require advance preparation and knowledge regarding them though gaining this knowledge really doesn't take much time. Simply reading about it in a book, or even a website makes one qualified to change positions or to breathe deeply or soften one's jaw. It even qualifies someone present to suggest it to a laboring woman.

Now this is where I think this plays into Rixa's discussion. I'm going to theorize that one reason hospital birth workers are not supportive of homebirth (in addition the other reasons suggested by Rixa and her readers) is that homebirth is the epitome of natural birth where it becomes clear how very little knowledge and expertise is needed (except for when it is). This idea would feel like a threat to their livelihood, their career choice and might breed just a little bit of resentment towards other professionals who have not slaved through the initiation rite of medical school and residency to end up doing very similar work.

Doctors might shy away from asking themselves the question: "If birth were simple and reading a few books qualified a person to attend births, then what was the point of all that education? It can't possibly be as easy as these books say it is."

And then, as I continue on this pretend inner-monologue, perhaps hospital workers then would get frustrated with their female patients: "How could they possibly think they know enough and think that reading some silly books are going to qualify them?"

But, now I'm dreaming, what would happen if hospital birth workers read these books with an open mind? Would they be compelled to try some of these strategies or to suggest them during a woman's labor?

Are these books written compellingly enough to convince an obstetrician that maybe hands and knees for pushing is worth the try?

Or--now I'm really dreaming--what if these books became required reading for OB residents and L&D nursing students? Just so they knew what "fluff" pregnant women are filling their minds with as they prepare for birth. Perhaps, the assignment could be given with the intent to debunk the misinformation and to encourage doctors to reflect and prepare for how they will respond when women present these ideas in prenatal appointment.

And, if the less academic, popular press reading is too unpalatable for our esteemed birth workers, perhaps the expose of childbirth in America written by journalist Jennifer Block "Pushed: The Painful Truth About Childbirth and Modern Maternity Care" could be recommended first as it provides thoughtful insights into each side of the topic.

In any degree, from a pregnant woman's perspective, this would be more beneficial from dismissing them all together or pretending like they don't exist. Not recognizing their influence creates a vacuum of information, a empty divide where patient and doctor are trying to yell across but the message keeps getting lost.

However, I would hazard to guess that, if hospital birth workers could open their minds a little bit, many of them could recognize the value of the information and see how the paradigm fits together to make the idea of homebirth and non-interventive, unmedicated birth plausible and attainable in relation to relative risk and safety.

Or at least perhaps, we could stop talking past each and be on the same page.