It might have been a fertility clinic I visited this morning, but I am more than my ovaries and fallopian tubes.
You might not be a head doctor, you might not care what happens inside my damaged head, but I do.
I am a whole person.
Nearly two years ago you saved my life.
In February 2014 I was happily pregnant with my long-awaited first baby. My midwife at my routine 24 week appointment had some concerns and sent me to the local hospital for further checks.
There you gave me the news that I had HELLP syndrome and severe preeclampsia, and that I was likely to have to deliver my baby that very night. My baby was at that time just one day over the legal liability limit, and I knew the chances of survival were slim.
The next couple of days consisted of crying a lot, being surrounded by all sorts of health professionals from different disciplines, and having all sorts of medical paraphernalia either attached to me or inserted inside me.
Thankfully I was able to hold on for another three days, and I was transferred to a bigger, specialist hospital in the meantime. Hugo was born by emergency Caesarean section at that hospital.
Sadly, Hugo was too small and premature, and he died in my arms 35 days later.
I am heartbroken.
I have since been grateful to the hospital and to you for saving my life, and for giving Hugo the best-possible chance.
The time since Hugo’s death has, I am sure you may understand, been incredibly challenging for me. I have been dealing not only with grief relating to the death of my precious boy, but the trauma of everything that happened to me, too.
I had never heard of HELLP syndrome before being diagnosed with it, and I did not know preeclampsia could strike so early in pregnancy. My illness, not to mention the drugs I was on meant my brain did not work properly for a good few weeks, and memories of several days are somewhat hazy.
For many months after Hugo’s death I blamed myself. For failing to be able to carry a baby to term. For putting myself first (I thought ‘consenting’ to the C section was that, not understanding in the maelstrom of grief was sacrificing my baby to save my own life). For Hugo not coming home (surely there must have been something I did not do right during his life, because the only stories about preemies you usually hear are the success stories where the proud parents say all the prayers and everything were worth it).
Now, I understand intellectually it was not my fault. I understand that no one truly knows what causes HELLP syndrome. I understand that if Hugo had not been born that morning I would be dead, too. I understand that I did not have a choice.
It is important for you to understand that knowledge does not make it any easier for me.
Finding therapy has been a battle, to say the least – I’ve only just started therapy for my needs in the past two weeks. It has taken that long for the local well being service to realise that I am perinatal (the lack of a baby confused them, you see).
Last year, my partner and I decided we’d like to start trying for another baby. After a few months of no blue line we went to the GP to ask to be referred. Hugo was conceived after one cycle of Clomid, and the GP agreed (as did my St George’s consultant when I had my debrief appointment) that would surely work again.
I had my first appointment at the hospital last September, with a junior colleague. We were a little frustrated to be told we would have to go through the gamut of fertility tests again (I’d done them all before Hugo). My follow-up appointment was last Wednesday, at 9am.
After waiting about 25 minutes, I asked the receptionist how long I’d be likely to be waiting, and we were told not long. I thought it unusual to be waiting that early in the morning, and my partner and I were uncomfortable waiting in the same area as I had when I was waiting for my scans when I was expecting Hugo. Of course, that morning there were pregnant women waiting for their own scans, and holding their green books.
It transpired the person we were due to see wasn’t actually there. In fact, they have retired. Yesterday, I had a letter via my GP telling me off for ‘failing to attend’. You really couldn’t make it up!
A kind staff member rearranged my appointment for this morning. I had a feeling the appointment was going to be with you, and felt rather anxious.
You see, I have been diagnosed with Post-Traumatic Stress Disorder. A symptom of PTSD is flashbacks. One of my most regular flashbacks is you giving me the news about HELLP syndrome. It is the moment when my life started to fall apart.
Being in the consultation room brought things back. I was surprised that you got straight to business with our results – no mention of what happened two years ago, asking how I was, and how sorry you were that Hugo had died. All human, compassionate, empathetic things so you would think.
I was told the test results revealed that I am not ovulating. You also referred to my BMI, which has increased since my last appointment. I was told my weight is the problem, and that I should ask my GP to refer me for slimming treatment and to cut out the carbs.
It’s all related to evidence and guidelines, apparently. Because everything in life is that black and white, isn’t it?
In my head, this is what I heard:
You are fat, stupid, and useless. A failure. You will never have a baby you can take home.
I started crying – wailing like an animal, in fact.
My partner asked you if he remembered us from two years ago. You did. Of course you did. So why no kindness or compassion from you?
The clinic nurse was kind and tried to comfort me, and was firm when I started to hyperventilate.
I was astonished, however, to be told that losing weight shouldn’t be too difficult because she can do it and I’m younger and prettier than her.
If we are talking about evidence, I am fairly certain there is none to support that hypothesis.
You mentioned a drug that can help ovulation, but it causes ovarian cancer. I asked if it was Clomid, which of course it is. I reminded you that drug helped me conceive Hugo – so, by inference I have added to my list of woes with the potential of ovarian cancer.
Except of course it doesn’t. Clomid may increase the risk of ovarian cancer. You weigh up pros and cons. And let’s not forget in my last pregnancy it was the pregnancy itself that proved to be the most life-threatening.
And let’s talk about the link between weight and ovulation. Yes, evidence shows a high BMI can cause ovulation problems. But what about all the women with ovulation problems who have a BMI in the ‘healthy’ range?
We also need to consider the assessment that “I am not ovulating”. That was based on one month. The tests were done in October 2015, the month where I had my meltdown. You did not know about this, no. But that is because you judged me. You did not engage with me.
As we are talking about evidence, evidence also suggests extreme stress can stop ovulation. Even without stress, not every woman necessarily ovulates every month.
Your manner this morning was that you were right, and that you knew everything. There was no compassion, no invitation to discuss anything.
You might be a consultant and therefore a specialist in your chosen field, but you are not superhuman or infallible.
Yes, I got incredibly upset in my appointment this morning. I cried a lot, and shouted a lot. I said lots of words beginning with ‘F’. I then stormed out.
I make no apology for any of this. It surely could have been avoided with a bit of kindness, compassion, and empathy.
An open dialogue, with open questions.
An open conversation about what the guidelines suggest, and what the local CCG’s guidelines around fertility treatments are.
Since everything that happened, I have had issues with anger. Zero to 60 in milliseconds. It’s the PTSD. From that traumatic time, remember?
The trauma and loss, you would hope, would carry an understanding that I have endured a lot already. An appreciation that it is good I am still here, even if there is too much of me.
I hope you will consider everything I have written here, and reflect. I have written it is an open letter on my blog in the hope that other clinicians will be able to learn from the experience, too.
It is wholly unacceptable.
I am submitting this open letter to the hospital as an extension to the formal complaint I made after last week’s incompetence.