With Dobbs, SCOTUS Just Made Agonizing Decisions on Fertility Care So Much Worse

 

Under the current Texas law that SCOTUS just upheld in Dobbs v. Jackson Women's Health, I could be charged with murder.  So could my fertility doctor, and every nurse and medical student who held my hand, all those years ago.

Why would I write about something so agonizing?  So volatile?  To try to save someone else from SCOTUS and state legislatures making it even worse.

Anyone who knows me or the hubby well is aware that we went through an agonizing fertility slog early in our marriage.  Years and years - six and a half years to be precise - of trying to have a baby and dealing with catastrophic losses and difficulties along the way.  Because we were working with a doctor who practiced at a teaching hospital, years of medical students got to follow us along our journey as they got a very detailed education in how to help an emotionally vulnerable yet very determined patient through all of the testing, shots, scans, more scans, more testing, more shots, more testing, more scans...you get the picture.

Working in women's reproductive health as a specialty is an incredible gift when it is done well, because you have to be able to nurture hope while simultaneously injecting realism into the most emotional and gut-wrenching moments of your patients' lives.  My doctor and his nurses held my hand and sometimes even cried with me and my hubby failed cycle after failed cycle, cared for me body and soul after every miscarriage, and celebrated when we finally...finally...found success in conceiving The Peanut.

One of my losses was an ectopic pregnancy.  

When we first found out that we were pregnant, it was just prior to Thanksgiving, and we were scheduled to fly out to AZ to be with my husband's family for the holiday.  We were overjoyed and made the mistake of sharing that joy way too early because it was the first time we'd finally gotten a positive result after all the years of trying (we were at the 5 year mark at this point).   We learned after this - for very specific and painful reasons - to hold any fertility possibility close to the vest until we knew for sure we were in the clear. (Some advice about this below.)*  

After a positive pregnancy test, our fertility doc brought me in for frequent monitoring to check to see if certain hormones and other things were doubling at the rate that signaled a healthy pregnancy.  When you are high risk, that means a lot of monitoring, so I was going in every other day for bloodwork for the first couple of weeks, juggling that and hearing schedules in court.  When the rate did not double as hoped for, the bloodwork became an every day thing, and by the end of monitoring, I looked like a heroin addict with palsy.  What started as the most joyous week of my life ended a month and a half later in a chemical abortion -- that is the clinical term for what was the most agonizing thing we have ever had to endure.

An ectopic pregnancy is not rare in the US.  There are somewhere around 200,000 cases of ectopic pregnancy each year.  An ectopic pregnancy happens when a fertilized egg becomes lodged in or attached to the Fallopian tube and does not go on through and into the uterus for gestation.  

An ectopic pregnancy can be deadly if not caught early, because a fallopian tube rupture in the wrong place which is unmonitored can lead to catastrophic bleeding or, even worse, sepsis if the growing tissue dies and infects the mother.  If not caught early enough, and the tube ruptures, you can lose the ability to conceive on that ovary side, because repairing the tube becomes nearly impossible due to massive tissue damage.  These cases are monitored really, really closely for these reasons.

Mine was a worst case scenario:  the developing tissue was one of rapid growth, but was never going to be an actual pregnancy because it was chemically mutated, but my body felt it as a pregnancy because it was giving off the right hormones, just in irregular and unstable amounts.  So I got all the pregnancy hormones, with no actual pregnancy.  Even more concerning, it was lodged in the worst possible place in my only functioning Fallopian tube, which meant if there was a rupture, our dream of having a child would end there.  

And it could kill me if the bleeding was not caught in time.

In 1/3 of ectopic pregnancy cases, the fertilized egg can sometimes go on to be a healthy pregnancy -- the zygote breaks free of the tube wall and makes its way to the uterus and attaches to form a healthy placenta.  I clung to that possibility like a life raft for a couple of weeks, but the science was very clear after weeks of testing that what we had growing in my tube was not a potential child, but some sort of increasingly unstable and irregular (but not cancerous) growth.

Under the current Texas law that Dobbs addressed, what happened next in my health treatment plan could result in my doctor, the nursing and hospital staff, my husband and me being charged with murder, for a rapidly growing knot of cells that would never become an actual child.

Because my doctor felt that treatment required giving me a weak solution of methotrexate (a chemo medication) that targets rapidly growing cells, and thus allows the body to have a chemical miscarriage that safely removes the unstable tissue growing in the tube, we would have been potentially subject to criminal investigation and charges.

Let me tell you how my month and a half went before I had to go in for a procedure to terminate the only potential child I had ever been able to carry.  Our trip for Thanksgiving had been cancelled because I could not risk a rupture in flight, as we worked to determine what choices we had with the pregnancy, and it was too early to tell which way it would go at that point.  Every day, for weeks, I went in for bloodwork and testing to see how things were developing.  Each day, I got more and more frantic about what the tests meant and how any of this might impact our ability to later conceive if I was not, as we suspected, carrying a child.

Every day, there was stress, anxiety, crying, exhaustion, begging, prayer, more crying, more begging, more prayer.  My husband was doing the same.  We clung to each other, and tried to have hope in the face of desperation and fear.

Every day.  For a month and a half.

This child, if it had actually been something that could have turned into a child, could not have been more wanted and loved.  But it was not to be.

My doctor made the best possible decision for me, for my body, for my situation.  We were blessed with people around us who were brilliant and cared about us as people, as much as they paid attention to the science and the potential outcomes.

We made the best decision possible for our family.  It was our choice.  Ours.  After talking with our doctor, after talking with each other, after prayers and making our own peace with what we were choosing.  But it was OUR choice, and no one else gets to ever judge it because no one else on this planet could ever know the agony of having to make it - unless they have stood in our shoes.

The afternoon we went to the hospital for the termination procedure, it was Christmas Eve.  The hospital was on a skeleton crew for the holidays, so the maternity ward was quiet and dark.  Yes, I had to go to the maternity ward for this, and I remember walking past the nursery and trying not to sob in front of happy families cooing at their babies, but my doctor was on call that evening for a high risk pregnancy, so that was where his nurse was to administer our medication.  That's where we needed to go.

They shuttled us into a quiet room at the end of the hallway, apologizing that the staff had not brought us into the ward the back way so that we hadn't gone past the nursery.  We mumbled something out of kindness, but honestly I was already in shock, and have no idea what I said.  

Bill held my hand, they popped a needle in the other arm for an IV drip, and I watched as they attached the sickly yellow-green radioactive bag of methotrexate into my arm, and the chemo poison began to enter my system to end the ectopic pregnancy.  The nurse left us alone for the first few minutes, and I remember sobbing into Bill's shoulder while he tried to hug away the pain.  We were gutted and hollow, and even now writing these words 20+ years later, I can still feel that ache like it was yesterday.

It was truly agony.  I would not wish it on anyone.  Ever.

For at least a week after the procedure, my body cramped and bled.  I cried enough over the course of that Christmas week to dehydrate an elephant.  

It was bleak enough that our dachshund refused to leave my side for a second without being dragged away, and Bill had to literally pick her up and force her to visit the yard when I couldn't summon the energy to take her.  For days, Bill and I clung to each other and mourned losing something that was never, ever going to be a life of any sort.  But it was the first time we had even gotten to the promise of any life, and that particular loss of hope was too heavy, too unbearable in the early days.

But that agonizing choice made by my doctor and by us saved my life, and it also saved the Fallopian tube on the ovary side that gave us The Peanut a year and a half later.

It was the best possible medical choice, and is still standard treatment for ectopic pregnancies of the sort that I had.

Now imagine going through that, and a couple of days later police officers show up at your house, because one of the nurses, or a cleaning lady, or a medical waste disposal technician at the hospital has reported you for having an abortion.  Technically, they'd be correct, because that is the precise medical term for what I had as a procedure.  Even for a clump of cells that were never, ever going to turn into a baby.  Imagine then having to prove what you were carrying was not a child, after you have suffered the most gut-wrenching and excruciating loss of your lifetime:  it would be a compounded agony on something already so unbearable that you can barely survive it.

The thought of that happening to someone who is already living through the shattered hell of an incomprehensible loss?  The cruelty of criminal charges on top of that is just unbearable.

Are doctors going to want to practice women's health under these criminal liability risks?  Are women going to trust medical staff once they start reporting them to the authorities when they come in after a miscarriage and instead of care face an accusation of criminal conduct?  

These are not hypothetical questions, because women in Texas have already had to face this, since SCOTUS allowed the Texas law to stand while appeals were pending.  Doctors have already had to face this, too.

And, worst case scenario, what if women stop trusting going to a medical provider for reproductive health care because they are getting reported for miscarriages and legitimate medical questions about the right way to handle a difficult medical situation like mine was?  How many women have to die before we start paying attention to the cost to women who are actually and currently alive?  How many women have to die or risk sterilization due to catastrophic infection before we see the lack of caring as much about the living women as we do for the potential not yet living maybe or maybe not fetus as a problem?

What do these laws mean for IVF and other fertility treatments?  Because the laws now on the books in Texas and Missouri and elsewhere don't provide exceptions for fertility treatments as they are currently written.  

Can you be prosecuted for not using some of your fertilized eggs once you've conceived your other two miracles and you think your family is complete?  Could those fertilized eggs be discarded after you are past the age of being able to physically bear a child, or will you be required to hire a surrogate to bring those fertilized eggs to term or risk prosecution if you do not?  

Are medical doctors going to want to work in fertility and reproductive care facing the insurance liability issue that have now been opened up with this decision?  Will women have to drive four states over to get reproductive health care in a state that doesn't have draconian laws that slam the breaks on factual, scientific medicine being practiced for women with high risk pregnancies like mine was?  

Will women have to risk being in actual sepsis -- where dead tissue from a pregnancy that has miscarried but has not been fully ejected by the body infects the womb and tissue of the woman carrying it?  What will that mean for that woman's fertility going forward?  How many women will die waiting to get to that point just prior to death in order to receive medical treatment?  

Because make no mistake, sepsis is not something that any doctor or medical professional would ordinarily be forced to ignore until it got to the absolute worst possible point before beginning treatment.  Until now.

None of these are comfortable questions, but women and their doctors are now having to ask them.

This does not even begin to touch questions of rape or incest, and how exceptions are not in some of the laws being proposed or already on the books.  That's an entirely different and really difficult conversation all on its own, and any prosecutor who has worked a rape or abuse and neglect case could make you weep with the stories they know about what horrible things human beings can do to each other.  If you have not grown up in a severely abusive environment or had to deal with a sexual assault in your lifetime, then count your blessings and have some true compassion for the poor souls who do.

It also doesn't touch on the disproportionate impact that all of this will have on the poor and disadvantaged.  The wealthy will keep going to France for an "extended vacay" to deal with their problems (yes, I knew someone in college whose family actually took care of "her situation" that way), but how is the poor single mom who was raped, barely scraping by as it is and has no transportation or childcare going to get medical care of any kind without insurance, a babysitter or a ride?  And after she has the baby she is forced to carry if the rape results in a pregnancy, will the already pared down social services in our country be enough to give the child more than a subsistence living?  Or do we still not even care once it is out of the womb?  

Are insurers going to be required to report women for medical care they receive, regardless of HIPAA requirements?  None of these are easy questions either, but they definitely need to have people in power and demanding this change thinking about how they are going to answer them - if women are forced to have a child after being raped, doesn't the society who forced her to do so owe her a little care and compassion for having required this?  I mean, honestly?

Worse still, this is absolutely going to impact how doctors receive training in medical schools all across the country.  I guarantee you that lawyers for hospitals and liability insurers are reviewing and revamping what they recommend can and can NOT be taught, just because of shifting liability purposes for medical schools and hospitals after this decision.  

How is that going to impact the quality of care for women in a nation where our maternal death rate was already on the rise before this case was even decided?

Or can we just be bluntly honest and say that we don't care about the ramifications on women's health care?

Are doctors going to receive training in medical schools on how to deal with emergency medical issues like mine?  Or will the medical school risk being sued or held criminally liable for doing so?  Remember, my situation happened at a teaching hospital -- all the medical students that worked alongside my doctor got real world training in a real world situation with me.  Will medical schools risk that now in states that have severe restrictions?  What will that mean for the level of medical care that women will now receive?

Take a moment to think about this:  what if it is your wife needing lifesaving care?  Your daughter?  Your granddaughter?  Not a hypothetical.  A real world question, because who would not move heaven and earth to save their child having a pregnancy complication?  But in a drive four states over to receive care because that's the closest state that provides it, how many things might go wrong in your hours in the car trying to find a doctor willing and able to practice that kind of medicine now?

There are very real consequences for a change in the law this drastic and sudden, where medicine has now been bound to a decision using rank politics and not the full extent of actual science as its guide.

Women's reproductive health care is not a "one size fits all" question.  Doctors and women have to make agonizing choices based on individual facts and circumstances that have thousands of permutations and potential pitfalls and possibilities.  Every woman's body and situation is different, which is why we generally leave these questions to women and their own doctor.

With the ruling in Dobbs, Justice Alito made crystal clear that the "woman" portion of the care is not his problem, and the moral ramifications of how that will adversely impact so many women going forward is not the Court's problem either.

How many women dying for this ruling will it take for the women's lives to some get consideration, too?  Any consideration? 

My daughter's generation is about to find out that answer in stark and real world terms.  I don't think any of us are prepared for what that is truly going to look like and what those answers are going to be.

*Pro tip for folks who have family or friends going through fertility hell:  don't ask when they are finally going to get pregnant or provide you with a grandchild while they are going through fertility treatment.  That's incredibly painful and just the absolute worst.  Just ask if things are going ok and if there is anything you can do to help, and let them lead the conversation - or not - from there, based on where they are emotionally at that moment.  Let the person suffering the agony of fertility hell guide the conversation. Or have the grace to not have a conversation if that is where they are at this point.  Please.