Women’s Health Rights
Mamas on Bedrest: You are the captain of this team!
March 22nd, 2013
I received the following comment to one of the blog posts from Mama on Bedrest H:
Hi, I was diagnosed with hyperechoic bowel, placentomology (?placentomegaly) with the Uterine artery showing flow reversal(IUGR) during my first pregnancy last year. My bp shot up to 135/85 during my 4th month, and I started having swelling in my tummy, yet never showed till my 6th month. My OB didn’t diagnosed anything until the 6th month, and kept telling me that everything was fine. At the beginning of 6th month I changed my OB and was diagnosed with all the problems but then it was too late and my new OB suggested an abortion as the arteries started reverse flow and the baby may die on its own. Now again I m pregnant and its my 4th month . I had an ultrasound done and the result was “both arteries showing high resistance flow”. My OB has suggested full bed rest. Are these all symptoms of preeclampsia? I’m also taking Ex(?ternal) heparin(?) injections everyday. Please guide me. Will this pregnancy remain safe?
While I LOVE hearing from mamas, I am always so sad when they ask for guidance. I cannot provide medical advice. First and foremost, I am not licensed to do so. I am a physician assistant but I am not currently practicing so I cannot offer medical advice. Second, given that I cannot see any of you, put hands on you or read your medical charts, even if I were licensed and practicing clinically, it would be shooting in the dark to offer medical advice on a person not directly in my care.
So what is a mama to do?
Mamas, when you are confronted with major medical complications during your pregnancy, the one bit of advice that I will give is for you to assemble your very own “dream team” of medical providers. “But I have an OB!” you may be saying. Yes, and your OB is a very important part of your team in that s/he will likely be the point of contact for all of your other “team members”. And while your OB will be your #1, your right hand Man (or woman) always remember that YOU are the captain of this team!
As Mama H’s case shows us, sometimes complications arise in bundles. While this is flat out scary, it doesn’t have to render you powerless. Assemble your dream team. Look at it this way. If you are going to remodel your kitchen (I love HGTV!!) and during the process you find some structural problems. What do you do? Well, on HGTV, they call in a structural engineer and make sure that there is nothing that needs to be done to assure the integrity of the structure. If repairs are needed they are made. In this case, the OB has noted placental complications, so carrying out the analogy, we need to call a “structural engineer” or a Maternal Fetal Medicine Specialist (MFM). These OB’s specialize in Obstetrical complications. They see and treat the “weirdest of the weird”. So if you have obstetrical complications, a consultation with a MFM should be at least considered if not undertaken to make sure “the underlying causes of the problem are managed with the greatest skill and expertise available.”
Mama H also has some bowel problems, so a consultation with a gastroenterologist is in order. Again, it may be nothing for her to worry about and may not impact her pregnancy in any way, but having someone who sees intestinal problems day in day out give their opinion is the best course of action in my book.
Finally, Mama H has an arterial issue that is causing back flow and elevated blood pressure. That to me screams cardiologist, in particular a vascular surgeon. She may be suffering from some sort of arterial narrowing or constriction, or she may have some other cause of the reverse flow. A vascular surgeon will be able to recognize the malady and make recommendations for treatment.
Now I know that many of you may be wondering, “Is it really necessary for Mama H to see all those specialists? Why can’t her OB manage her problems?” Back to our HGTV analogy. If the contractor notes an electrical problem, he doesn’t try to fix it himself, he calls in an electrician. If there are plumbing or sewage issues, he calls a plumber. So if ”specialists” are needed for our homes, why not for our bodies?? Some of you may be saying, “But my insurance may not cover all those doctor visits? What do I do?” I wholeheartedly recognize that seeing specialists is expensive and time consuming (especially getting the referral and pre-authorizations) but it is so worth it! Because specialist deal with the issues you are facing daily, they are typically up to date on the latest treatments, the latest research evidence and the latest nuances of your condition. In my experience, they are well worth the time and expense for the consultation. (More on the expense in the next post!)
Lastly, I want to add a little word here about OB’s. I have had more than one mama write and tell me that when she asked for a referral to a specialist that her OB got angry with her for questioning their judgment and expertise. At least one mama had her OB “fire” her from the practice for questioning his judgment. To this I say YOU have to be the captain of your team and at all times, you have to guide your treatment! Not only should you ask questions about your care, if you have any reservations or even a desire to just know more, you are well within your rights to seek another opinion. And DO NOT LET YOUR OB BULLY YOU!! If an OB threatens to fire you or withhold medical care or refuses to share your medical information, they are in breach of the Hippocratic Oath that says “first do no harm” as well as acting illegally (in the case of the medical records) and you may want to really consider if this is the person you want taking care of you and your baby. A really good OB will play a vital role in your care, but just like everyone else, they don’t know everything and you want an OB who is willing to admit that they don’t know everything and has no qualms or ego issues about consulting and working with a specialist.
I cannot stress enough the importance of assembling a dream team and assuming the role of team captain. Mamas, your pregnancies are very likely going to be the most significant medical issues of your life. Their outcomes can have significant health ramifications down the road for you and your child. This is no time to be shy or to assume that your OB knows what is best. Ask questions, stay informed and by all means, always make wise, informed health care choices! “Pro-Action” All the way!!
Mamas on Bedrest: Delaying Childbearing and the Cost to Society
January 25th, 2013I just finished reading a very thought provoking article which is pondering the question, “Cost implications to society of delaying childbirth.”
I am somewhat befuddled that this question is even being considered as I have always felt that when and how a woman or couple decide to have a baby is their decision and their decision alone. I know that in other countries, China in particular, there is huge governmental pressure to have only one child and if at all possible, to have a boy. China is currently dealing with a crisis in that they have a generation of males without enough females with whom to make and continue the culture. But that is a discussion for another day and I am going to try to stay on topic with the question of assisted reproductive technologies and women of increased maternal age.
This is a topic that is very near and dear to my heart as I had my first child at age 37 and gave birth to my second child at age 40. I never intended to have children that late in life. In all honesty, I was stressed beyond all recognition when I turned 30 and wasn’t dating and there was no prospect on the horizon. If I had had the option then to freeze embryos, I have to say that in all likelihood, I would have seized the opportunity. It would have alleviated years of stress, anxiety and relieved some of the decisions I have made over the years regarding my career and desire to have a family. I think that this is an aspect of the discussion not addressed. For many women, we don’t choose to delay childbearing, we delay because (not being self pollinating) we can’t conceive children on our own and are waiting for a partner to appear. Now, I also considered purchasing donor sperm and being inseminated when I was in my early 30′s. Again, due to my personal beliefs, I didn’t feel that this was a suitable solution and so I did not journey upon this route to a family. But this conundrum-the desire to have a family vs. not finding a suitable partner with which to raise a family was completely overlooked in this article. I think the underlying tone that women are somehow callous and career seeking is far too simplistic and biased and the assumption that women utilizing assisted reproductive technologies are somehow creating a financial burden on society is also misleading and biased.
Before I offer any more of my own opinions on this topic, I want to share with you all the highlights of the article so that we are all talking about the same things. The article begins by asking the question, Should women without any sort of medical reason (i.e. cancer or autoimmune disorder) be offered the option of freezing either their ovarian tissue, oocytes (eggs) or embryos so that they can delay childbearing? The article is evaluating whether or not the costs of egg or ovarian tissue preservation outweighs the benefit of having a child. One thing that I think this article did well is ask the question, “What is the actual value of having a family?” Who can really answer that question? I think that the answers will vary from person to person, culture to culture and It’s really hard to put a monetary value on bearing a child or having a family. Additionally, the article attempts to assess a cost to these assisted reproductive procedures and quite frankly, there is no uniformity, so it’s hard to say whether or not the costs outweigh the benefit. One thing that is discussed is the fact that currently, women who opt to freeze either ovarian tissue, eggs or embryos most often do so by paying for the procedures themselves. So with that in mind, is it any of society’s business what a woman chooses to spend her money upon? Does society have the right to say that, “The potential cost of having a baby via assisted reproductive technologies is so great that we don’t want women spending their money doing this.” I could see if this is a cost that is being foisted upon society at large, but as previously stated, most women who engage in these cryo-preservation procedures do so at their own expense, so raising this question is, to me, an invasion of privacy.
One question that I do believe we have to ask is, “Are we giving women a false sense of hope for future childbearing?” Many of the cryo-preservation procedures have limited success, and success really varies depending on the health of women, their personal “ovarian age” and many factors that one really can’t quantify. Thus, it’s really hard to say which women will have success with the procedures and which won’t. Now these are questions that, I believe, for which we must get more specific answers. Technology has again preceded ethics and at this point in time, we really don’t know if we should be offering these technologies to any woman who asks for them and is able to pay for them.
I appreciate the author’s attempt to ponder the question, “Should women, given what we know about cryopreservation procedures, be offered cryopreservation of their ovarian tissue, eggs or embryos so that they can delay childbearing?” But I think that the question should be posed as such, from the position of health, safety, efficacy and benefit to the women, not whether or not it presents an unnecessary burden on society. Again, most women who do cryopreservation pay for it out of pocket. Many women are not trying to set childbearing aside in favor of career building. They are trying to give themselves every opportunity to find a suitable mate with whom to raise a family, and are hoping against all hope that once they do find a suitable mate, they will have viable eggs with which they can have the children that they so desire.
Finally, I agree with the article in that we as a society and culture do need to offer more counsel and support to young women (and men because we are not a self polinating species and it is the responsibility of BOTH partners to care for the children they produce!!) as they are coming through their 20′s, the decade deemed “optimal” for child bearing, to make them aware of their potentially waning fertility (women and men!!), and to assist those who do have career aspirations to pursue career and have a family. (i.e. advancing paid family leave legislation, providing better childcare options, etc..)
Mamas on Bedrest: Medical Research and the African American Community
December 5th, 2012I have an interview tomorrow with a research group seeking to understand what matters most to mamas during pregnancy and birth. They are circulating a survey and are not receiving the response they’d like from mamas of color. They are asking me to share ideas that may increase participation amongst minority mamas, African American mamas in particular.
I am so happy to be able to assist with this research. I truly believe that the more mamas speak out about their needs during pregnancy (bed rest???) and childbirth, the more the medical community will have no choice but to listen and make changes.
As I’ve pondered what I may say, I realized that most if not all mamas want the same things for themselves and their offspring:
- Complication free pregnancies and childbirths that result in healthy babies.
- Access to quality health care before, during and after their pregnancies for themselves and their babies
- A safe and secure home
- Healthy, nourishing food for themselves and their children/families
- A healthy, happy family
- A living wage (either for themselves or their spouse/partner) so that they can support and provide for their families.
It’s pretty simple really. And if you look at mamas across species, these issues are the same for all mamas. The mama bear wants a quiet, cozy cave in which to birth and nurture her cubs, and food to feed them until they can go out on their own. The mama fox wants a cozy, safe foxhole in which to nurture and rear her pups. Mama bird builds the perfect nest high up away from danger in which she hatches her eggs, feeds her birdlings and eventually will send them on their way. And if anyone even contemplates hurting one of those “young ins”…Be prepared to lose life and limb because mamas of all species (humans included) will kill you as quickly as look at you if you approach/attack their young!
Contemplating the question further I began wondering, are the surveys reaching women of color? Research studies often target a certain demographic; working mamas or mamas of a certain educational background or age. In the African American Community, it may not be enough to simply look at age or income. You may need to look at where specifically to find the women. In the African American Community think churches, salons or other social/community gathering places.
Secondly, and perhaps more importantly, how you approach women in the African American Community is critical. There is a long history in this country of African American people being used as study subjects and being subject to various treatments and interventions without their understanding or consent. Cases in point: The Tuskegee Syphilis Experiment and The Immortal Life of Henrietta Lacks. These events are very contemporary, a mere one to two generations away depending on the age of the women you are querying. It’s hard to embrace a medical/health care system that has had such dubious behavior in the past which lead to such profound (negative) consequences for those “studied” and their families. And even though many African Americans have no direct relationship to the Tuskegee Syphilis Experiment or to Henrietta Lacks, almost every African American knows or has experienced discrimination or suboptimal treatment from the health care system in this country. So it’s really hard for African Americans to embrace medical research and the notion that “their best interests” are really going to be of utmost priority.
In the case of mamas, think of it in terms of mama bears; you are approaching her den and seeking access to her and her cubs (born and unborn). If she is not fully assured that she and her cubs are safe, she’s going to withdraw to safety first, or, if there isn’t time for that,attack! How you approach her can be the difference between life and death-of your study.
What is it going to take to lower the walls between the medical community and the African American Community? Kind of like animals we’re going to have to sniff eachothers’ butts. We’re going to have to find familiarity, a common ground upon which to establish a new foundation for relationship. It can be done. But it’s going to take time, patience and a whole lot of understanding on both sides.
