This post is about 5 years in the making. Thoughts started percolating not long after the birth of my 5 year old son and I plucked up the gumption to jot them down over the following years. I promised myself I would share this once my childbirth days were over - kind of superstitious in a way - you will understand why by the end. It's not current affairs, travel or Donald Trump, but in the hope it opens your mind to medical unknowns, research and appreciate the miracle of new life, then I'm happy.
It is your birthday, again. 4 now. That means if I am writing this it has taken me 4 years to take my mind back to that day and properly write this story. That day which should be etched in our memories as one of new life – of you finally gracing the world with your presence.
Photo - Wix
It was barely 36 hours after your delivery when my obstetrician told me in his matter of fact way, that my uterus might have to be removed. I nodded, listening gingerly to those words as I lay waiting for him to open me up again, my second abdominal surgery in 48 hours. He needed to explore what was going on inside of me.
I lay back in my intensive care room as you slept peacefully in your cot next to my bed. You were unaware of the constant beeping and flurry of medical staff attempting to save lives next door. My breasts were working – that was one positive, so your earlier screams had been silenced by my milk; you were replete and content. Perhaps you sensed what your Mum was going through, and were on your best behaviour.
Under a slight cloud of morphine I relayed my obstetrician’s warning about becoming barren to my ICU nurse. She also had a son with your name and was in tears. For the first time since stepping foot into the hospital for your delivery, I too shed tears.
No mother would want to be told so bluntly that her womb may be taken from her, only hours after delivering her first child. But my eyes dried up quickly and I smiled at you, sleeping perfectly beside me. If you could have held my hand to comfort me, you would have.
Up until then, the sequence of events following your birth hadn’t seemed so bad. I didn’t know childbirth to be any different. I certainly didn’t have any real knowledge of any fatal risks – or I chose to ignore them. Maybe it was the morphine, or the happy hormones, or both, that helped me ride through that time with a relative sense of calm and containment. The anesthetist told me I was a pretty tough nut, mentally and physically.
Once my condition had stabilized - my blood levels stable, bleeding diminishing - I learned that during your delivery (a text-book c-section) I experienced a very rare, and often-fatal obstetric emergency called an amniotic fluid embolism (AFE), also known as anaphylactic shock in pregnancy. In layman’s terms, this means that amniotic fluid passes into the maternal blood stream, and in some cases, prompts an almost allergic reaction by the Mum and an array of drastic consequences follow.
For me, the consequence of the AFE was that my body suffered a blood clotting disorder (disseminated intravascular coagulation - DIC) where essentially your blood doesn’t clot. The upshot is that you bleed uncontrollably. So although the delivery and immediate recovery went perfectly, it was when I started to breastfeed you for the first time that I began to bleed - a lot. I vomited as well - in between midwives hand expressing colostrum from my breast for you to drink. But as I was being prodded and examined, and as they struggled to find veins to take blood, I remained calm and was none the wiser as to the seriousness of it all.
As blood tests confirmed my haemoglobin was dropping I was moved to ICU where I received a number of blood transfusions – about 13 units of blood products. Which is about equal to the volume of blood my body normally carries. Had I been at home or in a hospital that lacked adequate stocks of my rare blood type (O negative) – I would not be here today.
Photo - Wix
I was one of the lucky ones though. I survived my AFE. The unlucky ones suffer brain damage, cardiac arrest, acute respiratory distress, organ failure, or do not live to tell the tale. The sobering fatality rate is very high, but because of difficulty of diagnosis estimates vary. Some reports suggest a fatality rate of up to 80%, while more recent data suggests 40%. As to the incidence of AFE itself, the statistics vary - recent research suggests it occurs in 2.5 of every 100,000 births, or 1 in 40,000 births in North America.
The cruel thing is that there is no rhyme or reason as to why AFE occurs. It’s rare, difficult to diagnose and totally unpredictable – almost like Russian Roulette.
I only got a real sense of the enormity of the trauma I had experienced when the doctors told my parents that I was lucky to be here. Before this, as I lay there for hours being pumped full of a stranger’s blood and enjoying my ‘on demand’ painkillers, I was almost in a state of blissful ignorance. I had my healthy baby, I was alive and apart from being swollen, bruised purple below my tummy button, and sporting a drain emerging from my right abdomen, my body showed few war wounds for the ordeal.
My uterus did survive the second surgery – while they did remove a massive milk-bottle size blood clot, they happily left my womanhood in tact. But months on, the trauma crept up behind me and tapped me on the shoulder.
What if I had not been in the fit, healthy state I was before I gave birth? What if I had been in a different hospital with not enough blood or the wrong blood type? What if my body had conked out and couldn’t fight back?
The experience left its mark on me. I began to see life through a different set of eyes, with a new appreciation. Sadly, what they say is true - it’s often not until you experience some form of trauma or death stares you in the face that you really appreciate the lot that is your life. Don’t get me wrong, the daily grind still gets to me but I am more grateful and now generally see the glass as half full. I know that life can be short.
It wasn’t until we started thinking about a sibling for you and me doing more research into AFE, that I had severe moments of thinking ‘I could so easily not have lived’. To overcome the mental hurdle of deciding to have another child, I needed to manage my anxiety.
I put my faith in my amazing medical team who saved me the first time, and who monitored me extremely closely throughout my subsequent pregnancies. I also worked hard on not being consumed the fear of the unknown. Your Dad and I made the decision to try for one sibling, and then another, based on the understanding that such a rare event was highly unlikely to happen again, and I guess, a huge amount of positive thinking.
But the risk of it happening to me again was there, and while it was slightly increased because of my prior AFE, overall the risk was minute. I was not aware of anyone who had suffered an AFE twice.
I also found incredible support through the Amniotic Fluid Embolism Foundation (a patient advocacy organization) and its support group for survivors and women wanting to have further children following an AFE. Reading the stories of these strong women reveals the brutal and silent underbelly of what childbirth can be like – even in the 21st century. The thing is, no one knows what causes AFE even though it is a leading cause of maternal death worldwide (and the leading cause of maternal death in Australia). A registry of survivors has been set up to facilitate research into this indiscriminate condition, which will hopefully, one day, provide us with answers.
I dug deep to find the strength to go into that delivery room a second and third time, to produce two more fabulous boys. The decision to have a third child was hard – it felt like we were pushing our luck. But that driving maternal force and my gut instinct (which often flies in the face of logic) meant I would regret not having another sibling for you.
I would not have had the mental strength to make and follow through with these decisions without your rock solid Dad. While the possibility of me dying did come up in conversation, it was shut down on the assumption that it just wasn’t going to happen and if it did, Daddy reassured me he would cope. It was me who had to own the decision.
When each of your brothers were handed to me after being delivered, everyone healthy, I broke down in tears – the release of the anxiety that had built up over the months leading to each delivery and utter relief to have a healthy baby. But the following hours were critical ones – for it wasn’t until I fed you in the ward after the delivery when things started to unravel. But we were fine and births two and three were complication free. Finally I knew what a healthy delivery was meant to be like, and how magical those first few days are meant to be.
Now there is a real sense of completeness, and a huge weight off my shoulders knowing I don’t have to put myself through a long pregnancy, maintaining a positive attitude and keeping those anxious demons at bay. Some days that strength and resolve escaped me but my mantra ‘lightning doesn’t strike twice’ kept me going.
This story is not meant to frighten pregnant women – rather to help generate a better understanding of this AFE beast and find a way to one day beat it. So please share this story to raise awareness of AFE and support for the Amniotic Fluid Embolism Foundation. The Foundation is working hard to facilitate medical research into the causes of AFE – which are currently unknown.
Blood donors saved my life – please go to the Red Cross website to find out how you or someone you know can donate blood.