Tag: pregnancy

Maternity Pay (Or Lack Thereof) in the USA

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This morning I read an article by the Huffington Post that reported on a recent visit to the USA by a UN delegation of 3 female human rights experts.  Their purpose? To assess gender equality in the USA.  The three women visited Alabama, Texas and Oregon to evaluate a wide range of US policies and attitudes as well as school, health and prison systems.  Apparently, the delegates were “appalled by the lack of gender equality in America”.  Well, the UN didn’t really need to send a delegation to come to that conclusion.  Amongst many areas of inequality, lagging behind world-wide standards, the one area that shocks me the most is paid maternity leave (or lack thereof).  The US is one of three countries in the world that does not guarantee women paid maternity leave.  Yes my non-American friends, this is quite unbelievable.

I cannot imagine for you, after all the added stresses and financial burdens of infertility to then be forced to make a decision about whether or not you can afford to take the time off work or how long you can take off without your job being threatened.   Now, there are some great companies in the US who do pay a reasonable amount of paid maternity leave…but they are also probably the same companies who have great infertility insurance coverage.  The financial battle doesn’t end for the family once the baby is born!  Oh no….

By the way, I haven’t even got onto the subject of paternity leave either.

Here is a wonderful 15 minute TED talk  about how the US needs paid family leave.  It brought me to the brink of tears (but that is quite easy to do for me ;-)) and is quite compelling.

https://embed-ssl.ted.com/talks/jessica_shortall_how_america_fails_new_parents_and_their_babies.html

I myself am lucky that although I live and work in the US, my employer is international so it takes the ‘average’ of all the different countries’ maternity leave policies and agrees a reasonable amount of full time paid leave.  Although I am British, unfortunately I won’t be able to take advantage of our government’s new scheme that allows the parents to decide which parent will take the maternity leave, the mother or the father – it can also be shared if so desired!  So Chris will get his 3 days of paternity leave or whatever it is not even worth writing about, but that is all.  Guess it’s all down to me then (for a few months at least to begin with)!

 

But not all hope is lost for my future American parents of newborns, things are moving forward today, there is a push by Obama to create a federal law for a minimum of 6 weeks paid maternity leave.  If I ever get a chance to have a say or participate in any kind of advocacy for US maternity pay I will jump at the chance.  I hope you will too!

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

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Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning

Compared to this, the 2 week wait will feel like a breeze

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Warning – grumpy Dani on the loose!!!

  1.  We turn up to my ‘monitoring’ appointment this morning, sign my waiver which only has a beta blood test and no ultrasound listed.  I point this out to the receptionist…she checks my notes, apparently in my notes my doctor said only for a beta because it was too early to see anything on the ultrasound.  Hmmmm, this is not what my doctor said on the phone on Thursday!!  She said now that my hCG levels were over a 1000 perhaps we would find Waldo this time!  Receptionist talks to doctor and adds the ultrasound to the waiver form.
  2. A nurse I have never met before takes my blood…after making me almost pass out.  She jabbed hard with the needle, Chris was watching, I wasn’t but it was REALLY painful.  He was pulling faces at me from across the room because he could see that the nurse did not have control over the needle – even with a butterfly clip the needle apparently flipped 180 degrees.  She was not apologetic and had not appreciation for the pain on my face or that she had even done anything wrong.  The other day when a nurse hit a valve she was so apologetic, but it barely hurt so I told her not to worry.  The nurse today – I give her a big fat Freddie F for FAIL.
  3. We waited an hour after my blood draw for the ultrasound.
  4. Once we are in the ultrasound room, lucky me – I get two different doctors again, one I have never met before – my doctor was not working Saturday.  Fair enough, everyone needs a break!!! No Waldo found today.  BUT both Chris and I noticed that my uterus looked different from the previous 2 ultrasounds, I think this is one of the downsides of having different doctors monitoring me.  Basically, the doctor sent me to have more blood drawn in preparation to take the methotrexate if my beta hCG levels are still rising.  They even discussed whether the labs would be able to get the results today stat and could get a prescription in at the campus hospital for them to administer tomorrow (Sunday).  They thought it would be possible.  We sat there nodding our heads.
  5. Chris asked if a different nurse could draw my blood as he explained the ineptitude of the earlier nurse.  I will admit that I was annoyed that Chris asked this because I would have preferred not to have caused a fuss, and being a reserved Brit, probably would have told the nurse that she had really hurt me earlier and shown her the bruises she left – then at least get an apology from her.  Anyway, the doctor kindly arranged for me to have a different nurse draw my blood from the other arm.   Blood drawn – nurse hits a valve – may be my body is telling the nurses it is done with blood draws.
  6. We wait for results all day.  It is now 9PM and I have not had a phone call today.  In the UK, if the doctor doesn’t call it’s a good thing.  I’m not sure that’s how it works here?  Chris thinks it’s a good thing.  I think the tests were not done ‘stat’ and there were simply no results today – usually the nurse would call to update me, but because it is a Saturday and we seemed to have got one nurse into trouble, no one has updated us.
  7. I am still pregnant unknown location (PUL) – i.e. rising hCG levels and no visible sign of pregnancy on ultrasound.

I have been concerned today that the on-call doctor wanted me to take the methotrexate tomorrow – but I realised after the appointment that my doctor had said she thought that as long as I have no symptoms and there is no pregnancy on the ultrasound she would keep monitoring me until I am 7 weeks pregnant (3 days time).  So I wondered how that would work – if the on-call doctor had a different opinion to my doctor, would my doctor be pissed.  I was planning on talking to the on-call doctor about this when I got my results, but this seems to be a moot point now she hasn’t called today.

I’ve done a bit of research into my situation of possible ectopic pregnancy and there is quite a bit about misdiagnosis of ectopic pregnancy.  Basically, doctors prefer to diagnose ectopic early to avoid rupture of the fallopian tube.  This makes a lot of sense….except there are many cases where doctors have been too early in their diagnosis and effectively terminated a healthy uterine pregnancy mistaking it for ectopic.  The most up to date information I found on PUL, ectopic pregnancies and methotrexate was discovered from an article: “Tragically Wrong: When Good Early Pregnancies Are Misdiagnosed As Bad“.  The author of the article is interviewing a Dr Peter Doubilet, one of the authors of a well written research paper: “Diagnostic criteria for nonviable pregnancy early in the first trimester”

I am literally copying the introduction to the article, written by Carey Goldberg, because I thought it was worth sharing, but the full article can be found here:  http://commonhealth.wbur.org/2013/10/ectopic-pregnancy-misdiagnosed-methotrexate

A beautiful, supremely talented young friend of our family recently fell victim to a terrible medical mistake. Newly married, she was having some pelvic pain and bleeding, and the doctor who saw her diagnosed a probable ectopic pregnancy — an embryo that develops outside the womb. Concerned that such pregnancies can turn life-threatening, the doctor prescribed the standard treatment: methotrexate, a drug used for chemotherapy and to help induce abortions.

When our friend returned to be checked a few days later, the imaging revealed that in fact, the pregnancy had not been ectopic; it was in place, in her uterus. But because she had taken the methotrexate, a known cause of birth defects, her pregnancy was doomed.  She soon miscarried. What may have been a perfectly healthy pregnancy had been ended by well-meant medical treatment.

I assumed her horrifying case was an exceedingly rare medical fluke — until now. A paper just out in the prestigious New England Journal of Medicine shows that such misdiagnosed pregnancies are part of a pattern — a pattern that needs to be changed. “Considerable evidence suggests that mistakes such as these are far from rare,” it says.

When I told our friend’s story to the paper’s lead author, Dr. Peter Doubilet, he responded that he knows of “dozens and dozens and dozens of similar cases that have come to lawsuits, and that’s probably the tip of the iceberg.” There is even a Facebook group, Misdiagnosed Ectopic, Given Methotrexate, run by a mother given methotrexate whose daughter was born with major birth defects.

The New England Journal of Medicine paper stems from a panel of international experts who resolved to change medical practice to stop such misdiagnoses.

When I read the research paper the most interesting take away for me was:

  • Women with a pregnancy of unknown location (PUL) and hCG levels of 2000 to 3000, the likelihood of ectopic pregnancy is 32.7%, the likelihood of nonviable intrauterine pregnancy is 65.5% and 1.7% for a viable intrauterine pregnancy.
  • Women with a PUL and hCG levels of 3000 or more, the likelihood of ectopic pregnancy is 33.2%, the likelihood of nonviable intrauterine pregnancy is 66.4% and 0.5% for a viable intrauterine pregnancy.

The authors recognise that these likelihoods are not highly precise, and there are some limitations to their data, but they argue that this does not matter, it purely demonstrates that ectopic pregnancy is not the likely outcome in PUL.  However, they point out that this is only true of the woman is hemodynamically stable and not presenting with abdominal pain. The one thing that was comforting to see was that there is limited risk in taking a few extra days to make a definitive diagnosis in a woman with PUL.

There is also one other interesting thing I discovered after looking up the facebook group  “Misdiagnosed Ectopic,Given Methotrexate”.  PUL is very common in women with a tipped (retroverted) uterus.  Why?  Because it can be harder to see an early intrauterine pregnancy on transvaginal ultrasound and may not be seen up to week 8.  A lady who created the website misdiagnosed miscarriage says that no research has been done on the relationship with retroverted uterus and misdiganosis of miscarriage.

What is my conclusion?  Keep going to the monitoring appointments, if I have pain – take myself to ER straight away, wait until my hCG levels rise enough to see something on the ultrasound- then we can make an informed decision on which drug to take to aid my miscarriage. – Or best of all situations, I just miscarry naturally.  Really, the next 2 week wait is going to seem like a breeze compared to this.

Where’s Waldo??

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“Where’s Waldo? – Do you know who Waldo is?”

My doctor asked me as she used the vaginal ultrasound to search my uterus and fallopian tubes for a potential sac.  Today at my ultrasound appointment my doctor carefully searched as she discussed it with the more ‘junior’ doctor.  The ‘junior’ doctor also had a go with ultrasound wand.  But nothing was there – not even that black teeny dot from Tuesday was there anymore.

My hCG went up to 1066 from 686 (55% increase in 44 hrs).  This is not the direction my beta levels should be heading in right now.

My doctor helpfully told us today that her cut off is 7 weeks for a decision on whether to use methotrexate; in the mean time if my hCG continues to rise she will closely monitor me every 48 hours with ultrasound and beta blood tests until 7 weeks.  Today I am 6 weeks 2 days pregnant, so only 5 days left for me to miscarry naturally. She is now more confident that when I return on Saturday they will see the growing empty sac now that my beta hCG is above 1000.  The question remains – where will this empty sac be?  We are still hoping it will be in the uterus and not the fallopian tube.

So I’m still on ectopic watch for now.  I have no bleeding or spotting, the odd pain twinge here and there, today I woke up a bit more nauseous and I’m starting to pee a lot again, so my ‘pregnancy’ symptoms are now returning as my hCG levels continue to rise.  But overall I feel physically well, a little bit mentally drained.

Today I took a sick day which was a good idea because I am not sure my brain could have coped with work today, instead I spent some time doing adult colouring in.  Very therapeutic, but sometimes I can’t stop because I don’t like leaving things unfinished, and then it stops being therapeutic as I create a chore for myself!!!

Anyway, until Saturday…..we continue to wait.

Sad, but starting to feel mad

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This afternoon I had my mobile (cell) phone with me on loud so I could hear the doctor ring with my results.  I get a lot of notifications and pings every 5 minutes so I am sure my colleagues were getting annoyed with me.  But anyway, I received three pings all at once, which I thought was odd, so I checked my email to find a notification from my clinic for a new appointment, with my doctor tomorrow morning (The three pings were from my email and app that tracks my appointments).  Well isn’t that just nice?  My eyes started to well up because I knew this had to be bad news – what a crappy way to find out?  After 20 minutes of consoling myself, I finally received the call from my doctor.  My hCG levels have continued to rise again to 686 (Tues) from 345 (Fri).  Not good news.  So my doctor starts talking more about this potentially being a tubal (ectopic) pregnancy…she didn’t really tell me anything new from yesterday, she stressed again that there is zero chance that I have a viable pregnancy (OK so I got that from yesterday when there was nothing on the ultrasound).

Tomorrow morning I will have another ultrasound to double check my uterus for a (non-viable) pregnancy and some blood tests to see if I am suitable candidate for the drug methotrexate.  I have done a bit more research into this drug, and I really want the doctor to explain all tomorrow – I will be using my 3 point guide to help me feel better informed!  The best guide I found is from the NHS:

“The use of methotrexate to treat pregnancy of unknown location and ectopic pregnancy” available here.

I have been having some random (but not sharp) short pains today, including pain on the left side.  I have also not passed any blood today.  The problem is with Irritable Bowel Syndrome for me is that stress causes pain, so I am having a hard time distinguishing between the two – I don’t feel stressed per se, but this rollercoaster surely can’t be good for my gut.

In the meantime I’m looking forward to tomorrow’s appointment as I move from feeling sad to feeling mad – mad that this feels really unfair and crappy.  I’m taking bets on how many med students/doctors/fellows/nurses they can squeeze this time in the room for my ultrasound tomorrow…..I have a feeling there will be some interest 😐

Nothing….

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There was nothing there on the ultrasound screen, just my beautiful uterus – empty.  There was the teeniest tiniest black spot that may have been the beginning of a sac, but it was so small my Doctor was not certain.  She didn’t need to say anything for me to quickly realise that I was not one of the lucky 1%.  My doctor checked my ovaries: my right one is still hyperstimulated from the IVF and I had some VERY big follicles/cysts (but this is normal for after IVF and of no concern, but may explain any pain I may have here), my left ovary too was swollen, but not as bad as my right one.

What does this mean?  It was difficult for my doctor to say without knowing what my beta test results are.  If my hCG levels are continuing to rise, it is likely that I have a tubal pregnancy (ectopic pregnancy – a pregnancy that grows outside of the uterus).  If my hCG levels are falling, then it will be safe to assume that I have a chemical pregnancy* and the little black spot on the screen was indeed huckleberry.

My symptoms have been spotting dark brown blood since Friday, general abdominal pains all day Monday, my spotting surprisingly stopped today (Tuesday).  I have had some pains specifically on my left side, although not overly sharp pains, and I pointed out to the doctor (doctors – there were 2 others in the room with her) where this was….yeh, about where my ovary/fallopian tubes are.

If this is a chemical pregnancy then the doctor will prescribe me some medication (a vaginal pessary, I cannot remember the name of it) to help my body along with expelling the uterine pregnancy.  If this medication doesn’t work, or my hCG levels come back higher with a likelihood of a tubal pregnancy, then I will be prescribed Methotrexate (an intramuscular injection – YEY another injection, of course!!!).  I want to avoid taking this drug because it will mean we are not allowed to conceive for at least another 3 months because the chemical can stay in the body and harm a developing embryo.  But at the same time, we don’t want to wait and see for too long because there is a chance my tube could rupture and I would lose a fallopian tube.  I have read that even after being given the shot their tube still ruptured because it was left too late.

So I was asking you to hope with me that I didn’t bleed, but now I want to bleed….please, please body, just bleed!!!  I think this will be one of those times when I cry tears of happiness when I start to bleed full flow!  I know it will also be sad at the same time….choo choo, all aboard the emotional train wreck!!!

I mentioned that there were two other doctors in the room, one was ‘shadowing’, the other was a fellow (no not a chappie you silly Brits!!!).  The fellow interjected and answered some of our questions, he was clearly very knowledgeable, but there was a lot of bouncing around between them.  Chris was getting frustrated with the information we were receiving, they were talking to us as if we were medical professionals.  It took 5 minutes of Chris’s continued questioning to get the doctors to say that despite the miscarriage being bad (and sad), what we were seeing was ‘normal’ or ‘common’.  What they really needed to start out with was – don’t worry, there is nothing seriously wrong with you, chemical pregnancies happen frequently with IVF (because they are transferring 2 embryos).  I think I had a bit more knowledge than Chris and didn’t feel quite as frustrated because I had googled a lot on miscarriage, chemical pregnancy, blighted ovum and have read forums/blogs etc.  So my lesson here is to share more of my ‘google expert medical opinion’ knowledge with Chris before these types of appointments.

We also discussed my hCG levels (49, 110 and 345) and my doctor did admit that my first hCG result of 49 was borderline low- to non viable.  So why, oh why, did the other doctor (who did my IUIs) seem so happy and chirpy on the phone, proceed to tell me my progesterone and estrogen levels were excellent but fail to tell me my hCG level.  All it required was this:  “Congratulations Ms Dani, you are pregnant, but your levels were a little lower than average, we would like to see you again in 5 days just to make sure you levels are doubling nicely.  Your estrogen & progesterone levels are excellent, so this is a good thing.”  Expectation management is not a bad thing.

So – we have one big question answered, I feel a relief, albeit a sad relief – there is no viable pregnancy.  The next big question we wait for an answer is – is this a chemical pregnancy or a tubal pregnancy?

*A chemical pregnancy is a clinical term for a very early miscarriage. It happens before an ultrasound could even detect a heartbeat (before the 5th week of gestation). This occurs when an egg is fertilized but it does not implant on the uterine wall. Chemical pregnancies are actually quite common, occurring in 50 – 60% of first pregnancies.  There are many possible causes of chemical pregnancy – inadequate uterine lining, low hormone levels, luteal phase defect, infection, or other unknown reasons. The most common assumption is that they are due to chromosomal problems in the developing foetus. This can result from poor sperm or egg quality, genetic abnormalities from either mother or father, or abnormal cell division of the foetus.

You just can’t make this stuff up – facebook again

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They say a picture paints a thousand words…so here it is.

stitch_fix

For those who cannot see this picture, it is a screen shot of my personal facebook post from this evening.  I wrote:

“It has been a difficult week for the both of us, I am pregnant, but the doctors have now given us less than a 1% chance of my pregnancy continuing successfully.  We wait to see how things go, but have readied ourselves for the worst.  We are being open and honest because so many other struggle with this in silence.  The IVF process has been a roller coaster of emotions for us and would like to say thank you for everyone supporting us through it all.”

Above my post is a facebook sponsored advert for stitch fix maternity clothes.  Can you believe how mad I was to see this – only 5 minutes after posting it??? Especially after I have already changed my facebook settings to prevent all ads relating to parenting, family, pregnancy, babies etc.  Clearly the facebook algorithm reads my post status with “I am pregnant” and over-rides my chosen settings.  The fact that I am already a stitch fix customer adds insult to injury!!

I will write to facebook to tell them how upset this made – in spite of the fact that I had changed my settings to prevent this from happening.  They really must do better at this.

On the positive side, we have had lots of love and kind messages in response.  We thought it was time we gave an update because today when we went to our softball social league where someone congratulated us – then we had to tell them the bad news, and I think they just felt awkward over it.  Facebook – the good, the bad and the ugly.

No results today….

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Before work this morning I went for my second beta test.

There was a new nurse helping out my favourite nurse.

My results have not materialised today.  The chief nurse called me at 1700 to tell me she has not seen them yet and she will make sure someone calls me tomorrow.

Coincidence?

I mean, how often does this happen???

My twisted mind thought of an alternative once it had gone past 4pm and the reason that I had not yet received a phone call, was that my results have come back not good and the doctor wasn’t there to give me the news with a way ahead.  Why am I so paranoid about this?  Well over the last few days my symptoms have pretty much disappeared.  OK so I know it is early still….but…..I took a test again last night because I was just not feeling right about it all…and the line looked much fainter than the other one BUT they are different brands so I probably shouldn’t really compare.  However it was pretty faint and I would have thought my line be darker by now?

Grrrrrrrrrrrrrrrrrrrrrrrrrrrr….I bet the new nurse messed it up and I am worrying all for NOTHING.

How to get the most out of your doctor

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It took me about 24hrs after it was confirmed that I am pregnant to realise I do not know how to be pregnant.  This might seem very weird considering we have been talking about this moment for more than two years now.  Once we started trying to conceive I just of buried my head in the sand.  I didn’t want to jinx our chances by buying a book about it, and I started to avoid all pregnancy related websites and apps after 6 months of failing to succeed in our quest to make a baby.  I know the basics, like smoking is a big no-no, drugs are dangerous, avoid raw meat and reduce caffeine, but really, that is the limits of my knowledge.  So yesterday we went to the book store and bought two books on pregnancy.  One was the standard text book “Great expectations: Your all in one resource for pregnancy”, and the second was “Expecting Better”, beautifully demonstrated in this picture by Sushi:

Sushi, my book keeper

Sushi, my book keeper

This second book interested me because I have always wondered whether Japanese women stop eating sushi, or French women stop eating brie when they are pregnant.  Really?  I don’t think so.  I hope that this book will enlighten me to what the conventional wisdom really means.  But when I started reading the first chapter I didn’t need to go much further with it to be completely satisfied with my purchase.  Why?  Well the author, Emily Oster, is not so different from me, she was not happy with what her doctor was telling her.  I realised that my experience with my fertility clinic’s doctors and the feeling I had that there was a poor lack of communication.  All of this was because I was not asking the right questions.  I didn’t know I needed to ask them.  And this is silly because all along I had the key questions in the back of my mind…I use them everyday at work!!!

In my job I help leaders make decisions every day…I do this by presenting the evidence, the facts – for and against a decision – I do some analysis on the data that supports the decision, I try to be unbiased and objective in my analysis, and then I present a recommendation to the leader on the best course of action.  The leader doesn’t always go with my recommendation, but I have presented them with the facts and figures to make their own mind up.  Sometimes I feel a bit hurt, but then I remember, I am not the one taking the risk.  So when it comes to our healthcare and doctors, WE are the decision makers.  We need to be presented with the arguments for and against, and be told what the supporting evidence is.  WE are unique in many different ways and the decisions we make will be unique, blanket guidelines are not always appropriate for everyone.

I think a good example of this is when we were told we should do ‘ICSI’ because of our unexplained infertility.  We didn’t ask the questions:  What are the pros of ICSI?  What are the cons of ICSI?  What are the improved success rates with people like us? (i.e. what’s the supporting evidence/data?)   We were not armed to make a decision, we just went with what the doctor said, and in the back of my mind I felt like I had not been given a chance to make a decision.  I did actually do a lot of this research myself, but it would have been better if my doctor would have told me – after all I am not the medical professional, I just have the fortunate ability to interpret statistics from studies and experiments.  So although I was finally happy with the decision to do ICSI after my research, something inside me was niggling about our doctor’s communication.

Another example is when it came to our embryo transfer.  We were told that it is the standard practice at the clinic to transfer 2 embryos on day 3, unless there were over 6 fertilised embryos then maybe we would be a candidate for waiting to Day 5 to transfer 2 blastocysts.  We did not ask the questions: what are the pros of us waiting to Day 5? What are the cons of us waiting to Day 5?  What are our personal chance of success with 4 fertilised embryos compared to if we had had 6? (i.e. what’s the supporting evidence/data?).  Again, I did a lot of this research myself.

I could go on with other opportunities throughout our infertility treatment where I could have asked these three simple questions that would have revealed the knowledge I needed to feel like I was in control of making a decision.  We rely on doctors to make the decisions for us…and most of the time I am happy with that fact, but there were times that I felt like we should hold that responsibility for a decision.  When it comes to my pregnancy I want to be able to ask these questions to my doctors and nurses so I can take the responsibility for making some of the big decisions such as prenatal testing or birthing plans.

Emily Oster suggests reading the book “Our medical mind: How to decide what is right for you” by Jerome Groopman and Pamela Hartzband.  I think I might try it, and I’ll let you know how it goes.  Has anyone read this one?

In the meantime my friends, next time you are in a consult with your doctor, remember these three simple questions to help you make the best decision, for you, and get the most out of your doctor….

  • What are the pros (for me)?
  • What are the cons (for me)?
  • What is the evidence/what are the chances (for me in particular)?

On being pregnant in a war zone Pt 1

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Spring 2007

I winced as the doctor examined my stomach.  The pain was excruciating.  As he prodded, he said “feel here…see?”  I felt my own stomach where he indicated – it was hard, not squishy like normal.  I continued to wince as he poked around my tummy.  “This is your poo.  You are constipated.  We will get you some laxatives and you should be better in a few……”.  The piercing alarm sounded.  We both looked at each other and quickly dived on to the floor.  My body armour and helmet were in the waiting room, no chance of me grabbing hold of it in time.  I leopard crawled under the table, it probably wouldn’t offer me much protection. The doctor grabbed his own body armour and helmet just as there was a loud thud and the ground shaked.  As he put his body armour on and quickly threw on his helmet, he mumbled “Here we go again!”  I wasn’t sure if he was trying to make conversation or if he had genuine grievance by the incoming rockets.  The way I was feeling about these rockets I felt it was probably the latter.  After a few minutes of what was probably the last rocket (usually 2-3 at a time), the doctor quickly stood up and said, “I’ve got to go, I’m on call for the crash emergency team.  Wait here until the all clear, someone will be with you soon.”  And he ran out of his office.

As I lay there on the dusty floor waiting for the all clear siren to sound, I felt stupid.  I felt stupid and embarrassed that all I had was constipation. I wondered how it had happened.  For the last 8 days I had hardly eaten a thing, I felt nauseous and I had horrific stomach pains.  These pains were sharp and short, sort of like my IBS pains, but twice as painful as usual. But this didn’t seem like IBS.  I promised myself I would go to the doctor after 7 days of feeling like this.

The all clear siren sounded. I got up and left the office to speak to the corporal at the reception desk. I explained what had happened, she told me to take a seat in the waiting room and another Doctor would see me shortly. I waited for half an hour. All I could think about was that someone must have been injured by the rocket attack, otherwise my doctor would be back by now. This made me very sad.

I was called into the very same office I had been in just 30 minutes ago, but this doctor was different. I explained that the previous doctor was just about to prescribe me something for constipation. He asked me to tell him from the beginning what the problem was and the symptoms I was suffering. He wasn’t going to sign anything until he made his own diagnosis.

He asked me all sorts of questions about my IBS, what I had been eating, how often etc…it all made sense to me. New environment, crappy food, stress from rockets. Usually my IBS presents with horrific diarrhea, but now my IBS was giving me constipation. Not uncommon, right? But this doctor asked me (like the other doctor) “Is there a chance you could be pregnant?” I laughed and said “No, very unlikely!”, he said, “Well let’s be sure, I want you to take a pregnancy test before I prescribe you anything”. “Sure….” I said, but muttered to myself “…if you want to waste our time”. The doctor called in the nurse and explained I was to take a pregnancy test. I dutifully peed in the cup and together we sat down and waited for the results. The nurse tried to make small talk about the recent rocket attack. She proceeded to tell me that a lot of girls try to get pregnant on purpose to avoid deploying or wanting to be sent home. But then her words slowly slurred to a halt, she paused and exclaimed with a look of unexpected shock “errrr you are………pregnant! Ummm, congratulations?!?”.

I could feel the blood drain from my face in disbelief. I haven’t had a period in years after my depo provera issues, how was this possible? What is going to happen now? I’m not ready for this. I’m not one of these girls who purposefully gets pregnant just to be sent home. I volunteered to deploy to Iraq! I volunteered to be with the rest of my unit. Despite the shit getting real with the rockets, I wanted to be there, to do my job, to serve my country.

I could hear in the distant background, the nurse asking me all sorts of questions about if this is what I wanted? Was I excited? Did I need anything? But I was in too much shock to answer her questions other than mumble a no.

The doctor who made me take the test called me back into his office and said “Well, now we can explain the constipation and nausea. But this doesn’t explain your pain. We need to make sure you are not having an ectopic pregnancy. Let’s get you to the Emergency Hospital for a checkup by the specialist. I was hurried out of the doctor’s office, into the back of an ambulance to drive the half mile to the emergency hospital. This was the most embarrassing thing of it all. Being driven into the ER entrance. Pregnant. Not shot, wounded or even sick. Just pregnant.

I had no idea what an ectopic pregnancy really meant. I was prodded and poked all over again by several nurses and doctors. They even checked my constipation and try to help it along, but there was nothing in there. There was no poo. After all, I had barely eaten for the last 7 days. I hadn’t pooed in 4 days.

Finally, my boyfriend arrived at the hospital (yes we were deployed together, we got it together during pre-deployment training). He had no idea why I was in the hospital, he had left me at the doctors only 2 hours ago! He looked panicked. I looked at him and tried to get the words out, but I just started crying. It was the first time I cried since finding out my news. Eventually he got it out of me, and we both cried. We cried conspicuously together as we were not really sure how else to do it, this crying thing.

The hospital facilities on our camp did not have a vaginal ultrasound machine. The closest one was in another country – Kuwait at a US Airforce base. They wanted to check if the pregnancy was ectopic as the symptoms matched. I was put on the medevac waiting list and told to go back to my room and rest until I was called to fly.

I went back to my room, cried a lot, read up on ectopic pregnancy, and asked myself a lot of questions. How will I explain this to my unit, to my boss? Will my boss know already? What are the rules on medical confidentiality? Will they send me home? Will I be discharged from the Army? What if I have an ectopic pregnancy? Should I tell my family? When will I be able to eat again? When will this pain go away? So many questions as I lay in my room, sometimes in bed, sometimes on the floor under my bed as the rockets kept coming throughout the day and night. Get some rest? Ha. No rest for me….

TBC.