Is the TDAP Vaccine safe?

October 22, 2016October 22, 201612 Comments

PC Diary @ 28W 1D

Is the TDAP Vaccine safe? This is a question I asked myself AFTER I had the vaccine when it was offered to me at my 28 week appointment. How unlike me to not look into it before hand!!!?!

I was given a bundle of information at my first OB appointment – it all went into a folder and I occasionally check through it to see what is coming up next in my pregnancy. It is pretty handy! But for some reason I didn’t bother reading the info about the TDAP Vaccine. Why? Well I thought, I’ve had it before so – blah. whatever.

What is the TDAP vaccine? It’s a combination vaccine to protect against Tetanus, Diptheria and Whooping cough (Pertussis). Well that is where I made my first mistake. In 2007 I had a Tetanus, Diptheria and POLIO vaccine. Not Pertussis. Silly Ps. Anyway that is irrelevant because that needs a booster every ten years or so if you are travelling to some countries, so it was about due. But actually here the issue is the Pertussis part – whooping cough. This is the part that pediatricians are most worried about. Babies can’t get vaccinated and start building protection against whooping cough until they are two months old. So to reduce this gap the mummy gets the vaccine during the third trimester of her pregnancy as there is some evidence that immunity may be passed on to baby. They also ask for dads, grandparents, caretakers etc visiting the baby in the early 2 months to also have the TDAP vaccine – to create a safety bubble around the baby. It all makes sense.

So when I was offered the vaccine I said – sure, yes! And signed my life away to receive it. I also said yes to getting the flu vaccine too. I have never had a flu vaccine before but thought as I am responsible for the baby I’m carrying I should probably get that too. So I had one injection in each arm. They were painless. In fact, anything compared to Progesterone in oil injections seems easy! The nurse asked which arm I would like my TDAP in because it can get a bit sore. So I asked for that one in my left arm.

Several hours later my arm started to ache as the nurse warned me. The arm with my flu shot also was sore a little bit, so sleeping was proving problematic. I like sleeping on my side so I struggled to get comfortable and had the worst night’s sleep EVER. Half way through the night I woke up in extreme pain, I was crying. My left arm had gone practically numb and the rest of my body ached like I had run a marathon. The next time I woke up (an hour later or so) the whole of my left side of my body was numb and tingly. What the ??!! I was exhausted and couldn’t face going into work. I was achey and shivery. I took a warm Epsom salt bath and a couple of paracetamol (acetaminophen) -the first time this pregnancy I have needed any drugs! The internet suggested Ibuprofen, but we know that is not recommended so I stuck with the paracetamol. After the bath I fell asleep for an hour and woke up feeling much much better. the drugs, sleep and heat must have worked! So I decided to take myself off to work because I had a lot to do and didn’t want to fall behind. Honestly, it wasn’t a great day at work, I would have done better working from home, but Chris was already working from home so that wouldn’t have worked out.

I came home from work feeling like crap. I wondered if this was normal. So I decided to read the info about the TDAP vaccine. Oh yeh – this can happen to 1 in 10 people who take it. WHAAAT?! So I then looked into it more online to see how people were fighting these side effects. Then I discovered the articles about TDAP in pregnant women. Seriously, googling this stuff had me FREAKED out. I came across websites dedicated to the dangers of TDAP in pregnant women. That the CDC was citing one trial on 48 women in 2013. Even I know that is statistically a pile of CRAP especially as this is about the effects on the unborn baby, not the woman. The recommendation for women to have this vaccine in their third trimester has only been around since 2012.

Headlines like: “TDAP vaccine pushed on pregnant women despite fetal risks” and “Is your unborn baby part of a vaccine experiment?” are some of the first to come up on google results.

So I started to freak out at my lack of due diligence. I had no clue when taking the vaccine how long it had been recommended for or what the evidence was. I asked Chris – did I just do something naively? Was this something new? Was I part of an experiment?

But after some more searching, I discovered that a lot of these stories are old and pre-date some much bigger studies that have been done over the past two years and recently published in 2015 and 2016. You have to look hard to find these, I guess because of google’s algorithms with popularity the hype stories and anti-vaccine pages come up first. Which is disappointing. Here are two recent studies that show that the vaccine is safe, with much more confidence than the CDC had in 2013.

Pertussis vaccination in pregnancy is safe, study finds and Infant outcomes after exposure to TDAP vaccine in pregnancy: an observational study.

Admittedly, scientists do say if the baby is exposed to whooping cough early on, there is a good chance the baby will still get whooping cough, but evidence indicates that if mummy had her vaccine in the third trimester the symptoms will be less severe or life threatening. So something to be aware of.

I only discovered all of this because I had a side effect to the vaccination, otherwise I wouldn’t have questioned it or thought otherwise! I’m pro-vaccinations. The only vaccination I ever turned down was anthrax, just before I deployed to Iraq. Why? Because even the Army nurse said I wouldn’t bother if I were you. Chris and I both want our children to be vaccinated as our pediatrician recommends, but perhaps I will be a bit smarter about reading up on what is actually being given to my baby – just so I can have an informed debate on the whole vaccination thing with people who don’t vaccinate their kids.

Our one frozen embryo

October 1, 2016October 1, 20169 Comments

Earlier this week at dinner Chris and I were talking and the topic of ‘we haven’t talked about timings for #2 baby yet’ came up. I talked about the minimum suggested time between giving birth and getting pregnant again according to doctors is after 12 months. I am not sure I would want to get pregnant sooner than that anyway! And so I said to Chris,

“well we can get ready for a frozen embryo transfer with our one left in the freezer after a year”.

Chris then said, “But I would like to try and conceive naturally first before doing a transfer”.

I paused, looked at him for a moment and just burst into tears.

I couldn’t explain to him exactly why I was crying, but I had a gazillion emotions running through me at that moment. It was difficult to process, but here are some of the things running around in my head before I could even get a word out between the tears….

A reminder that we were not able to conceive naturally in the first place.
It’s so so so unfair.
But what about our embryo in the freezer? How can we leave that behind?
I would LOVE to conceive naturally and believe that our infertility can be resolved and that pregnancy ‘resets’ my hormones (somehow).
We haven’t got to take home #1 yet, I can’t imagine #2!
Aghhhhhh this stuff is just scary to think about right now.
HORMONES HORMONES RAGING HORMONES can’t stop crying, why can i not stop crying???!!!

So Chris consoled me and asked me to talk to him. Once I gave my nose a good old blow, I started thinking all these things out loud. We had a long talk about it all, our thoughts, opinions and differences. But for me the most important thing I wanted to explore was the fact that we have one embryo in the freezer still. I was unsure what I felt about that, and how we should be involving that into our decision making. It lead to some general questions about the existence of life and ethics. Our journey to conceive and the stages we have faced along the way. We talked about attachment to our embryos and changes over time.

Every month I receive a bill of $60 from my fertility clinic for embryo storage costs. A monthly reminder of what we are lucky to have. This little embryo was frozen from our first IVF cycle and is the only embryo out of our three IVF cycles that made it to the freezer. So our frozen embryo is now over a year old already.

Each of the subsequent IVF cycles after our first I have often questioned the logic of pursing another round of IVF when we have one embryo ready to go. But it was all about an assessment of risk. Risk that we would prepare for a Frozen Embryo Transfer (FET) for our one and only embryo not to survive the thaw and have nothing. So the idea was to get at least another one to the freezer so we could de-risk the chances of preparing for a FET and not having anything to transfer. It was all about numbers. But the longer I think about it and further we got into IVF, our embryo is not just a number. It’s a life we created. Although many argue it’s not really a life as some people consider a life to be. It’s kind of mind boggling, and I wish I could articulate it in words.

So part of my response to Chris was my wrapped up with my convoluted feelings about our frozen embryo. Maybe it’s guilt or maybe I’m thinking why the hell are we paying $60 a month if we don’t plan on using it!

It’s complicated and we have lots of time to decide what to do if we decide to try for #2 baby. But I don’t ever forget about our frozen embryo, it’s existence and it’s strength to survive out of all our others 23 embryos (not including Rocky of course!). May be it’s a future brother or sister for Rocky. May be it will never survive the thaw. But it’s definitely not forgotten about.

Our two little 8 cell embryos – AKA HuckleBERRY and HuckleBERINA (because they look like raspberries)

Deciding on genetic screening

June 26, 2016June 26, 20169 Comments

At my first Obstetrician appointment at 10 weeks we talked about the options for genetic screening. My first homework assignment was to go away and figure out what we would like to screen for….in addition to finding out what our insurance would cover.

Aneuploidy Testing: These are the tests available for screening Trisomy 21 (Down Syndrome), Trisomy 18 (Edward’s Syndrome), Trisomy 13 (Patau Syndrome) and open neural tube defects (i.e. Spina bifida and anencephaly).

My OB offers three options for screening:

NIPT- Non Invasive Prenatal Testing (i.e. Harmony or Verify). This is a simple and accurate non invasive prenatal screening blood test. The test can be performed anytime after 10 weeks of gestation. In addition an AFP (alpha-fetoprotein) blood test to test for neural tube defects is also taken at this time. It is also possible to discover the gender of your baby through this test. Approximate cost $825.
Sequential Screening with Nuchal Translucency. This is a two-step test to detect whether a fetus is at increased risk. The test has a narrow window for testing (first step is performed between 10-13 weeks of gestation). It includes 2 blood draws and an ultrasound. The ultrasound measures the amount of fluid behind the baby’s neck (called the nuchal translucency NT). The blood tests measures three different hormone levels, these measurements in combination with maternal information such as height and weight are used to calculate the baby’s risk of Down’s Syndrome or Edward’s Syndrome. The AFP blood test (described in 1) is also taken. Approximate cost $580
Quad Screen (aka quadruple marker test). This is a blood test that measures levels of four substances in a pregnant woman’s blood – AFP, hCG, Estriol and Inhibin A. typically this screen is done between weeks 15 and 20 of gestation. Approximate cost $305.

If any of tests come up with a positive result then additional testing can be performed (These are the more invasive tests you may hear about such as CVS or amniocentesis where the doctor extracts a sample of the baby’s cells from the uterus. Amniocentesis is where a thin needle is inserted through the belly and into the amniotic sac to take a sample of the amniotic fluid. CVS is where the doctor uses a needle through the belly or cervix and takes some placenta cells. These tests carry a very small risk of miscarriage).

Additional Screening Offered:

Cystic Fibrosis. Cystic fibrosis is the most common inherited disease of children and young adults. The carrier frequency is 1 in 24, to 1 in 97. Both parents need to be carriers for a child to be affected (25% chance). 1 in 2500 children born are affected. Cystic Fibrosis is a disorder of mucus production and produces abnormally thick mucus leading to life threatening lunc infections, digestion problems, poor growth, infertility and more. Symptoms range from mild to severe, but individuals with severe disease may die in childhood. With treatments today, people with Cystic Fibrosis can live in their 30s. Cystic Fibrosis does not affect intelligence. Approximate cost $800.
Spinal Muscular Atrophy (SMA). SMA is the most common inhered cause of early childhood death. The carrier frequency is 1 in 47 to 1 in 73 in the US and both parents need to be carrier or a child to be affected (25% chance). 1 in 11,000 children are affected. SMA is a progressive degeneration of lower motor neurons. Muscle weakness is the most common type with respiratory failure by the age of 2 years old. Muscles responsible for crawling, walking, swallowing, and head and neck control are most severely affected. Approximate cost: $625.
Fragile X Syndrome (the most common inherited cause of developmental delays). Fragile X syndrome is an ‘X-linked’ genetic disease which means it is only carried by the mother. Unfortunately, 1 in 250 females are carriers and a child has a 50% chance of being affected if this is the case. 1 in 4000 boys is affected with Fragile X and 1 in 8000 girls. Approximately 1/3 of all children born with fragile X also has autism and hyperactivity. Approximate cost $390.

What have we decided?

We decided we would like to do the NIPT (Non Invasive Prenatal Testing) for the aneuploidy testing. Why? The accuracy is significantly higher than the other two tests and the false positive rate is very low (0.1%) compared to the other two tests (sequential screening rate is 3.5%, quad screen rate is 5%). Our insurance also covers it, plus it would be nice to have an idea of the gender – although that is a Brucie Bonus because the chances are we are going to wait until a lot later for a gender reveal party, so we are in no hurry!

We will also ask for Fragile X syndrome screening too because one of my brothers has autism and my mum doesn’t know if she is a carrier, so it makes sense to take the test.

My next OB appointment is tomorrow – Monday – afternoon to talk through what we would like to do and to go over my blood test results from my first appointment (they all came back clear, including my slight anemia which I was worried about, so that’s good). If I have my blood drawn tomorrow then the results will take 2 weeks to come back. Another 2 week wait!!

On a side note, I didn’t know much about Down’s syndrome, Edward’s syndrome or Patau syndrome….so I had a read about it all. It’s very interesting to find out more and I’m glad I have educated myself about these a bit more.

How to make big decisions when dealing with infertility

December 21, 20154 Comments

Throughout infertility we are often faced with the kind of decisions that are life changing. Life changing decisions for the more fertilely inclined will probably involve: whether or not to get married, which house to buy, where their next holiday destination will be, what career to choose, whether to stay or quit a job, and of course, the classic – whether they should tell their best friend that their partner is cheating on them.

For us infertiles it might also include whether or not to re-mortgage the house to pay for another round of IVF treatment, adoption, surrogacy or a.n.other expensive treatment, whether to undertake genetic testing of embryos, which body part to sell for the exuberantly priced hormonal medications we have to buy or whether to terminate a pregnancy to save our own lives.

Ok so I might have trivialised the decisions fertile people make (Please don’t take offense!), but I think you get my point. Making decisions throughout the process is tough. Fortunately for me, this is my line of business…I help the military make tough decisions, whether it is on operations or in peace time, I help them to see the wood for the trees.

So there are a few of the more simple techniques that I can show you that you might be able to use to help you when you get stuck in a rutt. They are also useful to work through with your partner. In-fact, it is is even better if you do work them through with your partner (or your BFF, sister or other close relative). Getting an outsider’s perspective from someone who you trust can be helpful (obviously you don’t have to listen to them :-)).

I’ll order the techniques in difficulty, starting with the easiest first…

PLUSSES, MINUSES, INTERESTING (+, -, ?)

Take out a large blank piece of paper and write at the top of your paper the dilemma you are trying to resolve. For example. Take methotrexate treatment to terminate suspected ectopic pregnancy.
Draw three columns down the page, each with the heading: Plusses, Minuses, Interesting.
Start with the Plusses column. Think about what the likely positive outcomes would be if you took the action. Write each point down with a plus sign”+”.
Next think about the likely negative consequences if you took the action. Write each point down with a negative sign “-“.
You may also write down things that are interesting about taking this action – these might be outcomes that you are simply unsure of what the future might hold. Write each of these down with a question mark “?”.
Simultaneously get your partner to follow the exact same process. Make sure they write what they feel, not what they think you want them to write!!! This is a time for honesty.
Now compare your lists and talk about the differences you might have and why. If you don’t understand something on each other’s list then use the couple’s validation technique (described here) to help you explore each other’s feelings. It is important to explore your differences and understand why they might exist.
Hopefully a conclusion will fall out of this list writing. If it doesn’t, then the dilemma you are facing is probably too complex for this technique, you may want to try another approach.

6 THINKING HATS

This is one of my favourite techniques! You can do this on your own or with your partner, or as many other people as you like (ideally no more than 6 people otherwise it gets a bit chaotic!) This technique makes you think with 6 different perspectives and helps you to organise your thoughts. Edward De Bono who created this technique says:

“The main difficulty of thinking is confusion”.

He is quite right, and this technique helps to overcome a lot of the confusion in our minds.

I like to have 6 separate blank pieces of paper ready. 1 for each of the 6 hats.
Take your first sheet of paper, and write at the top: THE WHITE HAT – FACTS & INFORMATION. The white hat makes you think about data and information. It is used to record information that is currently available and to identify information that may be needed to help with your decision. I.e. questions you may need to ask your medical practitioners. Now think about all the facts you have about the problem you are facing. For example, costs $$, available budget $$, dates, times, who is involved, who is not involved – any other facts or information you may have. Write all these down. Don’t forget to add any questions you may have that you simply do not know the facts of at that very moment – this is important! Once you have run out of facts and information…move onto the next step.
Take your second sheet of paper, and write at the top: THE RED HAT – FEELINGS. The red hat is associated with feelings, intuition and emotion. this hat allows people to put forward their gut feelings without justification or prejudice. Now write down your gut feelings you may have. For example: “This drug is going to kill my immune system so I know I’m going to be sick for a long time after I take this injection. I don’t want to be sick anymore, I’m sick of being sick”. Once you captured your feelings move onto the next step.
Take your third sheet of paper, and write at the top: THE YELLOW HAT – BENEFITS. The yellow hat is for a positive view of things. It looks for benefits in a situation. This hat encourages positivity even with people who tend to be more critical. Now write down all the benefits you can think of. Try to see the positive light when ‘wearing’ this yellow hat. Once you have run out of positivity (!!) move onto the next step.
Take your fourth piece of paper, and write at the top: THE BLACK HAT – CAUTIONS. The black hat relates to caution. It is used for critical judgement. Sometimes it is easy to spend a lot of time focusing on this hat. Now write down all the issues or downsides you can think of. It is often easy to be the critic. So for every negative, try to match it with a positive (using the yellow hat list and add to the yellow hat list if you need to). Once you have finished being negative, move onto the next step.
Take your fifth piece of paper, and write at the top: THE GREEN HAT – CREATIVITY. The green hat is for creative thinking and generating new ideas. This is your creative thinking cap. Review your list so far. Try to think about how you might want to overcome some of the negatives on your list – think creatively!! You could try writing something crazy or wacky down to start with, then try to turn that crazy idea to something more realistic. This can be difficult to do on your own! Get some thoughts from other people!! It is important at this stage to not immediately put down any idea your partner may make. All ideas are good ideas when ‘wearing’ the green hat. When you are ready move onto the final step.
Take your sixth and final piece of paper, and write at the top: THE BLUE HAT – CONTROL. The blue hat is the time to think some more about the thinking you have just done! The blue hat reviews, summarises, concludes and makes decisions. Now is the time to review your other 5 sheets of paper, add any last final ideas (it is OK to go back and look for any gaps in any of your 5 hats)…and time to discuss with your partner, similarly to the +, -, ? technique resolve differences in opinions and make some decisions.

Hopefully this technique will help you consider all sides of an argument and help you find some alternate points to your specific dilemma you may never have considered before. The thing I love about this technique is that you can do this with your partner without worrying about ending up arguing. Only negative things can be said when wearing the black hat…!!! Use that to help you get things out on the table. You can download a blank template here: http://www.slideshare.net/zhigangfang/six-thinking-hats-worksheet But I would highly recommend doing the YELLOW HAT BEFORE THE BLACK HAT!!! Sometimes you can do the BLACK HAT before the YELLOW HAT, but it really is up to you 🙂

It is simple once you have done it once, and after you remember the 6 hats, you can apply this as a mental model to any decision you want to make.

MAKE A DECISION!!!

This isn’t really a formal technique per se, but it is something I came across a while ago when I was making a decision about whether or not to take methotrexate to terminate my suspected ectopic pregnancy.

I used this notepad to help me make a decision whether or not to take methotrexate

I bought a pad of paper that had blank lines to fill in anytime you want to make a decision.

It nicely mixes up the two techniques I have already explained, and it is quite funny. You can buy these ‘Knock Knock’ notepads from amazon here.

OK this post is long enough already….I’ll write about some more decision making techniques another day 🙂

O-Day

December 13, 201514 Comments

Chris and I shower together – we have a bath that has two shower heads at either end, so we share. It’s impossible to switch either one off, so we have to shower together to save on the water!!! It was a bit weird at first, but we have discovered this is the one time of day that we can have a conversation without interruptions. Today, as we were getting in the shower together Chris asked me

“when will it be baby making time?”.

I knew it was today. Today is ovulation day. I don’t need an ovulation predictor kit to tell me this. I am just so experienced at it, I just know when it’s going to happen. All the signs and symptoms are here. O-Day.

I turned to Chris and said that I am not sure I want to try this month. (For some quite selfish reasons I’ll go into a minute.) He said “Maybe if we are not trying our hardest, we are not ready to become parents”. I told him that is a perception not a fact…. I was pretty mad at him for saying that.

….And then I just burst into tears.

I can tell you that being in the shower whilst crying is a great place to be. You can cry your hardest and it just doesn’t matter where the tears and snot roll down you face.

Let me tell you why I cried. I cried because I do feel selfish. I thought about not trying this month because my period is due on my Birthday, a few days after Christmas. Between O-day and then (the dreaded two week wait) I would feel guilty for every sip of alcohol I drink. Which will mean I will not want to drink. But I LOVE Christmas drinks – mulled wine, bubbly, mimosas, red wine, hod toddies, baileys coffee, port. I’m not an alcoholic BTW!! Last year, I had a couple of Christmas drinks knowing there was a chance I could be pregnant.

I am also going to be in the 2 week wait worry – and I am out of practice of this. The last time I was in the 2WW worry I remember feeling incredibly emotional. I have just got over being sad about the way things worked out after IVF 1. I want to be emotionally sound going into IVF 2. If I get a negative test (which will happen to be on my Birthday by the way) I get yet another punch in the stomach that I can’t get pregnant on my own. To which I already know this. Why do I want to mess with my sanity when I am in a good place right now? I would love to not go through another round of IVF. Seriously, it would be the best thing in the world.

Unexplained infertility leaves you with feelings of ‘There is nothing stopping you get pregnant’. Maybe we could get pregnant without medical intervention. So I then have a huge rack of guilt. Surely if I want a baby then these things all shouldn’t matter – I should just suck it up.

Chris says he understands. But honestly, I don’t think he understands how I truly feel, it is difficult to understand unless you have felt it. Yes, he feels the pain of this too. But it’s not his body that wakes up everyday in the two week wait, hoping – losing hope with every twinge your body makes. It turns your inside out, it makes you feel sick, it makes you well up on the verge of tears, it eats you alive. Infertility does this. It puts you in position of feeling guilty for not trying your hardest. But sometimes you want to screw up that infertility and throw it in the “just fuck-it bucket”.

I haven’t decided yet. My feelings are mixed and confused right now.

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

November 29, 2015November 29, 201512 Comments

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

How to get the most out of your doctor

August 23, 2015August 23, 201512 Comments

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

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….