The Affordable Care Act and Infertility, Revisited

Several years ago, during the heyday of this blog and my adventure as an infertilite, I wrote a little ditty about how increasing Americans’ access to health care was a good thing, and that the law that would become known as “Obamacare” was particularly good for women.  Little did I know that post would become one of the most read and searched for of all the posts in this blog.

So I’m going to do it again.

On the “verge” of “repealing and replacing” the Affordable Care Act (ACA, aka Obamacare), we face a lot of unknowns about what will actually happen.  A draft of the first version of the bill was circulated just 24 hours ago (notably to news outlets that have been denied entry into the White House Press Room), but it’s still just a draft and there may still be many battles to fight.  Therefore it would be a waste of my time to simply go through the draft and say all the problems that are wrong with it.  Instead, I’d like to give you the information to take to your representatives – local, state, and national – so you can tell them how you, fellow infertilite or concerned citizen, are personally impacted by the benefits of the law.

Are you a woman with health insurance?  If so, you’ve probably noticed that your annual visits to your OB/GYN, mammograms and other screening procedures, and birth control contraceptives are covered.  If you have been pregnant in the last few years, all of your visits pertaining to pregnancy, whether to your general practitioner, a midwife, or MFM specialists, are covered.  The birth is covered, too.  Providing for well-care visits and pregnancy-related care is a national mandate of ACA.  The proposed repeal and replace bill removes the national mandate for insurance companies to cover pregnancy, meaning that it will be up to your state and/or the marketplace to determine how much coverage is provided for and how much you would have to pay out of pocket.  Which means that, should you happen to only have access to plans with minimal coverage, you might have to choose between keeping your electricity on and paying for your hospital stay.  Tell your representatives that providing for pregnancy-related care is a basic human right.

Do you have a pre-existing condition, such as, I don’t know, infertility caused by a uterine abnormality?  Under ACA, an insurance company cannot deny you coverage based on pre-existing conditions.  The draft bill released yesterday keeps most of this part of “Obamacare,” but does limit the kinds of conditions allowed under protection.   Tell your representatives to keep this protection of coverage for all people regardless of pre-existing conditions.

Do you want to wait a few more years to have a child just so you can get a bigger tax break on your insurance?  Currently, the ACA provides subsidies to cover some of the cost of an insurance plan based on your income, so that the burden of coverage is more evenly distributed.  The draft bill proposes that older people, who generally are sick more often and have more medications, would get a bigger tax credit than a healthy 30-year old – almost twice as much.  But where is the equality in this situation when the 30-year old might more likely have one or more dependents who need coverage, and family-level insurance plans aren’t exactly a bargain.  Tell your representatives to keep tax credits for health insurance based on need, not on an arbitrary factor such as age.

Do you think your property taxes are too high?  You might be wondering what property taxes might have to do with health insurance, so let me explain.  Services such as Medicaid are provided by your county in part from federal money that they are granted.  Republicans have talked about creating “block grants” of money, essentially capping the amount of federal money states have access to, which leaves states, counties, and cities in a terrible predicament: do we cut services to people on Medicaid – for instance, do we close nursing homes which would displace seniors and increase unemployment in our community for the doctors, nurses, and workers who worked there – or do we find another way to pay for it?  And they’ll likely find another way to pay for it through your property taxes.  Tell your representative to keep Medicaid expansion.

Finally, I’m going to address the issue of Planned Parenthood, which under the Republican bill would lose all federal funding.  Supposedly because, and solely because, it provides access to abortion services.  What they don’t tell you is that the other 97% of services provided by Planned Parenthood to men and women across the country include preventative health exams, providing contraception, tests and treatments for STIs, Pap smears, breast exams, and outreach to schools and college campuses.  One in five women have reportedly visited a Planned Parenthood at least once in her life (see the link here).  I know abortion is a highly personal topic and questions about life run so morally deep I can’t even begin to illustrate the range of them here.  But I do know that this country was settled by a brave group of individuals at Plymouth who were considered outlaws in their home country for their beliefs and who sought to find a place where they could live as they chose in peace.  Tell your representatives to let us continue to live our life as we choose, to keep our choices for what we do with our bodies our decision, not decided for us by lawmakers, and keep the funding in Planned Parenthood.

I will continue to update the blog as progress on the health care bill continues.

TMI

When I saw an article last summer about a woman who took to social media to expose and essentially pressure a school to stop asking questions perceived as too personal on a kindergarten application, I didn’t read it.  I thought it would pertain to one school, or just a handful of schools that maybe don’t have it together, and one parent making a mountainous outrage out of a question she could just as easily have ignored.

Then I took my kids to the dentist, and I was asked during the intake process if there were any complications with the pregnancies.  Not exactly the place I’d expect to ever get that question.

I’m not opposed to answering questions like this when it comes to my children – not in a protected privacy setting like the doctor’s office.  After all, there’s lot of research that what happens in the womb and even during birth can have lasting lifetime effects on children – from chance of obesity to reaching developmental milestones – which is presumably why there’s a question on the kindergarten registration.  But teeth?  Really?  And, who cares?  Teeth can be fixed, right?

So when I’m asked the question, I quickly dust off my elevator speech.  “Intrauterine growth restriction.”  The nurse, who was sweet, kind, and only asking questions as they popped up on her computer screen, continued, “Do you know what caused it?”  “I have a unicornuate uterus.”  I could tell by her pause that she hadn’t heard it before.  “I basically have half a uterus,” I finished.  She smiled and thanked me for the explanation.  No more questions.

Now, I still kind of doubt that a dentist would really need to know about that but maybe there’s a reason for it.  And why wouldn’t a school want to know if a child is coming in at a disadvantage compared to other kids, particularly if that child might need additional services?  And wouldn’t you as a parent want to advocate for your child?

I think if I were to put this into perspective, imagine for a moment that it’s 1985 and the question on the form was instead, “Did you smoke while pregnant?”  A loaded question, for sure, but at the time lots of people still smoked around kids and didn’t think there was anything wrong with it.  Three decades and lots of research later we know better to the point that legislations abound protecting kids from second hand smoke and a horde of other ills; but would you have blamed phys ed teachers in the 80s for wanting to know if a kid might have asthma?

So I went back to read the New York Times article after my experience at the dentist.  If suddenly people are probing into your kids’ health history as far back as birth then maybe there’s more I need to consider.  And it seems that the author of the article saw the question as an egregious invasion of privacy and didn’t like that the registration form wasn’t kept locked up under lock and key.  Okay, maybe that’s a valid point.  But is that really more egregious than search engines using information they know about you to sell customized ads and make money?  More egregious than apps on your phone wanting access to your identity, pictures, text messages, and location?  How do you think Google knows when stores are busy, or Instagram knows when one of your friends creates an account, or your phone gives you coupons for the supermarket you just pulled up to?  Is anybody wondering how secure any of that information linked to you is, where that is stored?  And I think my pictures, my messages, my email, my location are more valuable to me to protect than knowing if my kid was born through a C-section or not.  Especially if said information can actually help my child.

Here’s the original article about the kindergarten questionnaire.  And yes, my school district’s questionnaire asks the same question.

Participate, educate, and be heard

Yeah, so that Affordable Health Care Act review isn’t going to happen. I have a million excuses to use, most of which include my kids, but which also includes the daunting website itself. I underestimated the amount of free time I would have. But free time starts out as a fantasy with a newborn and increases exponentially as they get older.  And it’s only worse with another toddler added into the mix. So it’s a no-go… at least for now.

Fortunately we are only less than two years away from choosing the next president. This is a chance for you, as a voter, to ask whether policy makers will support your reproductive rights, support funding for treatment of your diagnosis, and support ARTs.  For an idea of where potential candidates stand on this issue – because for most politicians, and probably for a great deal of the general public, “reproductive rights” is a euphemism for right-to-life/abortion rights – you’ll probably have to dig a little deeper into their speeches and voting histories.  I just Googled “where does Marco Rubio stand on infertility treatments” and got a big fat nothing, though there is already some chatter about whether he’ll stick with the Catholic Church’s doctrine on that.  But it’s early in the campaigning and if someone, somewhere, asked anybody about anything it’s probably going to be documented somewhere…

…And it might also be spun somewhere.  So while we’re learning about what Hillary is going to do for the little people (aka. the village raising the children), or how Dr. Paul is going to get government out of the way for people, remember that there are few independent unbiased voices in the fray.  Media outlets – conservative and liberal alike – don’t always tell the entire story.  Candidates – heck, even senators, representatives, and probably your mayor if s/he’s running for reelection – are coached to say words that sound like answers but are really vague statements that are either so eloquent or so obtuse that we forget what the original question was in the first place and by the end we are ready to move on.  It’s kind of like looking at a Jackson Pollock.

One: Number 31, 1950

It’s substantive.  It’s impressive.  And it might even make you feel something, although this one makes me feel dissonance, like my eyes are listening to static.  Then you feel, “But is it art?”  And then you wonder if that was his message all along, and we’ll never know, because once art is viewed it becomes an experience shaped by both the viewer and the artist alike.

…See what I mean?  Back to the point – voting is only democratic when it happens in the aggregate.  Like choosing organic at the supermarket – alone you might feel like it doesn’t make a huge difference, but if enough people do it we begin to see change in choices.  Voting with your money is yet another way to use your voice. And infertilites already have voices on the outskirts of the mainstream.

Participate, educate, and be heard.

 

News about what’s next

I realized that over the last year, while I haven’t had much time – or even infertility-related news, considering – to keep up on the blog, that my most popular posts aren’t even the ones having to do with medical conditions. I guess with unicornuate uteruses being rare to begin with there just isn’t a huge demand for information for it. No, instead some of my popular blogs have been product reviews and, strangely enough, about Obamacare. It seems weird to me that of all places on the internet, this website is a popular hit among people wanting to find out whether or not Obamacare covers infertility treatmets. And my initial posting on that was rather vague, given that Obamacare hadn’t been rolled out yet. But now we’re almost approaching one year of Obamacare being available, so it’s time to update the post.

I plan on continuing to provide product reviews and updates. I still have a few more posts to go about my experiences with my now five-month-old, and my new life as a stay-at-home-mom (temporarily!). But my next big focus is going to be delving into more details about Obamacare. I personally don’t know a lot about it, only what I’ve heard about in the news or what friends and family have told me about their experiences with it. And in order for me to really be able to answer the question, “Does Obamacare cover infertility treatments?” I’m going to have to do a lot more learning about it. I am not going to be the expert. But I feel I owe you, the reader – and perhaps you, the person who used Google to find me, you who are new to the land of the infertilite – a little more in the way of navigating the answer. It’s going to take me a while, but I hope to have something substantial by the time I’m through. In the meantime, expect some more reviews and updates from me. Thanks for reading and happy fall!

Yes, my boobs are weird…

So remember how I said that I keep reading that “there are few medical reasons” why a woman couldn’t breastfeed, but never saw any references for what those might be? Well, here’s one: hypoplasia.

Hypoplasia is a term most often used by plastic surgeons to describe breasts that haven’t developed fully. Sometimes described as “empty sacs,” hypoplastic breasts don’t look full and round. And the tissue that doesn’t develop during puberty may have trouble producing enough milk later.

I don’t think that hypoplasia and Mullerian anomalies are partners in crime, but hypoplasia can be caused by estrogen-mimicking chemicals like BPA and parabens in fragrances, shampoos, and other girly things. Good reasons to avoid them.

So I don’t know for sure that I have hypoplasia. Most obgyns don’t talk about it because it is truly more aesthetic than medical in its implications – that is, until you start breastfeeding. In fact, in one report I read it’s mainly women with hypoplasia who sign up for breast augmentation, feeling something was “off” about their breasts. If I asked a plastic surgeon I’d probably get an answer. Until then, this is all self-diagnosed – but with the photos available on the internet I’m pretty darn sure I’ve got this.

The main symptoms, if they can be called that, are:
Widely spaced breasts, over 1.5 inches apart (check)
Breast asymmetry, with one breast larger than the other (check)
Stretch marks on the breast (check)
Tubular breast shape (um, check?)
Really big areola
Absence of breast changes in pregnancy or post-partum (kind of)

Big breasts and little breasts alike can be hypoplastic. It’s the shape and placement that matters most. Finally, an explanation for why I always felt like a grown woman with a 12-year-old’s chest. Let me put it this way – I was always jealous of the way my friends could fill out shirts. A good push-up bra often gave me little cleavage, cleavage that usually went up, not together, making my boobs look like lumps of fat and not desirable objects. In fact, in order to get the kind of cleavage where my boobs would meet in the middle, I’d have to really force them together to the point of pain, and still I’d get nothing more than a line.

Don’t get me started on the lopsidedness. It’s only gotten worse with the pregnancies, and it would make me laugh more if it wasn’t so sad-looking.

“But you’re breastfeeding now, so why does this matter to me?” I’ll tell you why this matters. Consistent with the theme of this blog, know your body, your medical history, and get a thorough evaluation especially if you have trouble TTC. Some women with hypoplasia can successfully breastfeed, but not as easily as “normal” women. They need more support: physical, emotional, and moral. Their lactation consultant will want to be more aggressive about feelings, or be open to discuss supplementation if needed. And she will need to forgive herself for something she cannot change or control.

The Sjogren’s connection

One night, halfway through my daughter’s evening “cluster feeding” session, where she nurses for hours gathering all the calories she’ll need for several hours of sleep (NOT COMPLAINING that she sleeps 7, 8, sometimes 9 hours at night), my husband brought me a glass of water.  Dutifully, he had read that everytime you nurse you should drink a glass of water.  More water = more milk, as one of my nurses had said.  “Here you go, my dry wife.”

“Oh my God,” I said.  “That’s it!”  Eureka – maybe it’s the Sjogren’s!

As I type this, I have a dry mouth and I’m wondering where my water is.  It’s not because I’m breastfeeding.  It’s because I have an extremely mild case of Sjogren’s syndrome, diagnosed about four years ago by none other than an opthamologist.  I had been experiencing discomfort with my contact lenses, and it turns out I had developed cysts under my eyelids from dry eye and from not changing out my contacts enough, and wearing them too long during the day.  My doctor, concerned about a woman so young having dry eye like me, sent me to a specialist in autoimmune diseases.  The specialist listened to my case and a blood test confirmed his (and my doctor’s) suspicions: I had Sjogren’s syndrome.  It rarely shows up in women younger than 40, and as it was I seemed to have a mild, manageable case – even my bloodtest was borderline, my results being the lowest count of antibodies you can have and still be considered to have the disease.

In Sjogren’s, your body’s moisture producing glands don’t produce enough moisture.  Oh, don’t worry, I still sweat plenty.  But I’m always thirsty – rather, I need liquids to help me swallow my food.  I have had a ton of cavities though I take care of my teeth – because I don’t make enough saliva to kill the bacteria in my mouth.  I have dry skin and moisturize daily, even in the summer.  And I have dry eye.  It’s really not that bad, compared to people who have to take medication for their Sjogren’s.  I’m good with just a few changes to my routine. A year of Restasis, for instance, rid me of the cysts on my eyes and I’m vigilant about changing my contacts on time and not wearing them for 16 hours a day.

While there’s sparse studies linking Sjogrens to trouble with breastfeeding, there is anecdotal evidence on the internet. And it seems logical to me. Rather than reiterate what is out there, here is my favorite article by a Sjogrens formula-feeding mom:

Fearless Formula Feeder – Sjogrens

But if you need something more scientific, here’s a great response on a breastfeeding website:

Medical professional response about breastfeeding with Sjogren’s

When I had my eureka moment, my wonderful husband shared in my response. “That makes a lot of sense,” he said, and reiterated his support for making a bottle of formula whenever needed.

Love him.

Still, I said before that I had two theories about medical conditions preventing me from having a great milk supply, and the second reason is a little more graphic and personal. It is also pure speculation on my part – it’s never been confirmed by a doctor, but then again I never brought it up. How do you explain to your doctor that you think your breasts are shaped weird?

The breastfeeding freakout, part 2: The odds are still against me

Let me start this post by saying that with better support from a caring lactation consultant, I have been able to breastfeed my daughter better than I was my son.  I’ve heard that milk comes in better the second time around.  I also advocated harder for support and knew a little bit more about it, having already done it.  Still, my daughter gets one, sometimes two, bottles of formula a day.  And trust me, it’s not for lack of trying.  I have come to the conclusion that the odds are still against me: my body is just not capable of producing enough milk for a baby.  After a year and a half of wondering, I have two new conclusions as to why that is.

Plenty of websites and medical professionals, lactation consultants included, love to tell you that if your baby fusses while breastfeeding, it’s not because you don’t have enough milk: “It’s just a growth spurt.  Hang in there!”  “Every woman can breastfeed successfully if she tries hard enough.”  “There are very few reasons why a woman couldn’t breastfeed successfully.”  Did you hear that last one?  There are reasons why you wouldn’t be able to breastfeed.  The ones usually stated have to do with the immediate health of the mother – surgery or illness, for instance.  It’s extremely difficult to find any information on true medical diagnoses that might lead to a woman not being able to breastfeed – a diagnosis that she might have known prior to pregnancy and might have been able to seek more support or at least prepare for supplementing, mentally, physically, and let’s face it, economically.  Formula ain’t cheap.

My daughter lost 12% of her baby weight while in the hospital before I began supplementing her with formula, the same as my son.  Her fussying and crying was exactly the same as his.  And the look of relief, “Ahhh!  Food!  Now that’s what I’m talking about!” was the same as my son’s once her father gave her the first bottle and first taste of formula.  It was an easier decision to make in the moment to supplement, having had to do it once before.  Still, all the doctors, nurses, and lactation consultants assured me that I could stop once my milk came in.

A few days later, I began to finally hear the puff-puff noise of my daughter swallowing while feeding.  What a satisfying sound.  Yes, I did it!  I thought.  I am woman after all!  Half-a-uterus be damned.  But by 7 or 8pm, the fussing continued or worsened, and I begrudgingly continued supplementing with a bottle.  She gained back the weight she needed to and passed her checkups with flying colors.  She was perfect, right on track.  No more, no less.  “You can stop with the formula now,” the pediatrician said.

Well, easier said than done.  In fact, there has only been one or two days in the last seven weeks that my daughter didn’t have formula, not including the first few in the hospital.  More than once I broke down in tears after hours of crying, fussying, and sucking: “Why can’t I be enough?  Why can’t I be enough for her?”  I asked myself if she was supposed to be happy between feedings, like the doctor said she would be, why is she still cranky, tired, or hungry?  She’s not colicky, because I can soothe her… with food.

I tried another “nursing vacation” where you do nothing but nurse for days.  And guess what?  As with my son, it didn’t work.

So I started wondering again, Surely this isn’t for lack of trying.  What might be the cause, something that no one talks about because they don’t want to give you an excuse for giving up on the very difficult work of breastfeeding?

The first clue dawned on me one night as my husband brought me yet another glass of water.