Today is my son’s 26th birthday but unfortunately, he only lived for 9 hours. And so today, my grief takes centre stage. Not that it’s ever far from my mind.

My grief has brought with it an important life lesson today that is affecting the way I am seeing the difficult life situation we are all finding ourselves in: the global pandemic brought to us by the infamous COVID-19.

The lessons only make sense if I start with the story.

The locket with Cody’s photo in it sits on my desk within arm’s reach. I no longer wear it, as it’s a little out of fashion after 26 years. The two little boxes of mementos of his too-short life are stored in the garage these days, but they always come out to play on his birthday. Birthdays are meant to be fun, aren’t they?

Sadly, Cody never got to have a fun birthday. Even the actual day of his birth was spent fighting for life.

I was encouraged to hold him in my arms for most of the first two hours of his life, oblivious to the fact that each passing moment took him further from the possibility that medical intervention would have a hope of saving him. I would trade those moments in a heartbeat for the chance to be with him today.

Four of my five live births were medically induced labours and only this one was the “birth of my dreams”: a successful natural birth with no intervention other than a little nitrous oxide, which is saying something given his 11-pound 6-ounce (5+kg) size! I would give up the natural birth a hundred times over if it would give me even one more day with my son.

It’s uncanny that we often hold so tightly to our birth plan, as though the day of birth means anything much at all in the grand scheme of things. I was so determined not to have a medically induced labour. I desperately wanted to bring my son into the world in the Birth Centre at our local hospital, with one of the midwives who had been through the pregnancy with me.

My first birth had been one of those hellish labour stories that can frighten the uninitiated away from the idea of parenthood altogether, but those long, long hours of labour pale into insignificance in comparison to the years we’ve spent together since then. I am thankful every day for the gift of four living, breathing humans who call me Mum, and I still grieve for the one who never got to utter a word.

Cody was born breathing, but with a severed umbilical cord. He spent 2 hours with us in the Birth Centre. Those two hours should have been spent in the neonatal intensive care ward (NICU), because of the ruptured umbilical cord, his size, and my bleeding. There was a hospital policy in place to ensure that babies over 10 pounds are taken to the nursery, but our midwife described it to us as a “silly hospital rule”. She was very proud of having delivered an “11 and a half pound baby” naturally and seemed more excited at the number on the scale than on her duty of care.

I believe that our midwife had a bias against intervention, which clouded her judgment and led to the death of our baby. 

  • Instead of pressing the big red button on the wall, or the pager on her belt, bringing immediate help from the hospital upstairs, the midwife tried needlessly to independently manage my care and the needs of a macroscopic baby in respiratory distress
  • Instead of whisking Cody away to the neonatal intensive care ward as soon as he was born, the midwife gave him to his father to resuscitate while she dealt with my apparent haemorrhaging.
  • Instead of getting additional, appropriate medical assistance, the midwife shouted instructions across the room to an untrained father about how to force much-needed oxygen into his baby’s lungs.
  • Instead of suctioning the meconium from Cody’s lungs (because she was busy with me), she expected my then-husband to undertake a medical procedure he was not trained in, that ended up leading to his own baby’s death.
  • Instead of doing the APGAR tests at 1 and 5 minutes, when he was being “bagged with oxygen”, the midwife did them about 30 minutes later and lied about the timing in her notes.
  • Instead of writing an accurate APGAR score, she gave him a score of 2 out of 2 for respiration, while he was literally being given oxygen to help him breathe. Can you make sense of that?
  • Instead of providing appropriate medical interventions after pointing out to us his signs of respiratory distress, she relied on skin-to-skin contact, a warm blanket and a cup of hot tea.
  • Instead of undertaking any appropriate examinations apart from the APGARs at 30 minutes, she relied on my observations but gave no heed to my comments such as, “He seems floppy,” “His legs are heavy,” and “He whimpers when I move him.”
  • Instead of taking Cody to the NICU when I eventually had a shower, she left Cody alone in a room while she sat outside smoking and writing up a long stream of inaccurate notes.

There is more, but I am sure you’ve heard enough.

I still carry some guilt and shame about the time I held Cody in my arms, trusting the midwife’s judgment and the very low key “interventions” mentioned above. I would give up those 2 hours of contact in an instant if I had even just an inkling of the medical knowledge our experienced midwife had. I know it’s not really my guilt to bear, as it was the midwife’s failure to act that failed to prevent his death. An investigation by the Health Care Complaints Commission found her guilty of 12 counts of gross negligence. (Her failings were so bad that we had a legal case for criminal negligence, our barrister told us, but that was not a path we wanted to pursue.)

I have just one photo of Cody, living and breathing on his own, cradled in my arms. Just one photo of him before he got strapped too late into the machine that would help him in his tenacious fight to hold on to life. In this photo, he is in my arms, flesh against flesh, my dearly beloved newborn baby. This photo is so precious to me, as it is the only one where he is alive and not on life-support. I have always kept the original photo to myself as it is a little… messy, taken very very soon after birth. (Births are messy!) Until now.

Things have changed a lot since 1995 when Cody was born. Back then, medical staff typically used Polaroid cameras to take photos when it was apparent to them that a good outcome may not be likely. The photos were typically neither good quality nor long-lasting. A few years ago, when I was facilitating a Sands group for bereaved parents, people often spoke of the amazingly beautiful photographs taken by Heartfelt after their baby’s death. Heartfelt is a generous charity, with professional photographers who generously give their time and skill to create photographic memories for bereaved parents to treasure forever. I wondered if it might be possible for them to somehow edit the photo I had of Cody, so I tentatively reached out to them.

They generously and kindly offered to do what they could with my old photo but they couldn’t make any grand promises about what was possible, I was so pleased! Eventually, I received a beautiful package with the edited photo and a gift-quality thumb drive so I could make more copies. The photo is still not great quality, but it is deeply meaningful and precious to me and I’m happy to share it now.

Neonatal Loss

When Cody was finally taken to the NICU, the midwife declared, “Oh my God, he’s not breathing!” He spent the next 7 hours on “life support” which is an odd name for it really, as it feels more like a life battle: the machines versus the looming death, ever threatening to win the fight. The level of care he was given by NICU staff and the helicopter crew cannot be faulted.

Another precious photo I have shows Cody on life-support just prior to him being airlifted to Sydney Children’s Hospital. It is the only photo I have of him where his eyes are slightly open. I can clearly recall the moment, as we said our final goodbyes before he was taken to the helicopter by the Newborn Emergency Transport Team. I could barely stand (did I mention he was over 11 pounds?) but I wanted so desperately to etch the moment in my mind, in case the unimaginable happened. I longed for him with every fibre of my exhausted, aching body. His eyes were only open for a short while, but they pierced my soul and I feel connected to him, still.

I am so glad that I soaked up what I could at that moment, as it was to be the last time I would see him alive.

Neonatal Intensive Care

One day, I hope to find just the right artist who can create a painting of Cody, blending the above two photographs.

Initially, we couldn’t fathom that our favourite midwife could have somehow been complicit in the outcome that had ripped the fabric of our lives apart. We even invited her to the funeral! But something was amiss.

The attending paediatrician later called us from his holiday to say something didn’t add up. Concerned about the mismatch between what was written in Cody’s notes and the blood tests that were taken when he arrived in the NICU ward, he strongly advised an autopsy to try to uncover what had happened.

The thought of an autopsy was horrendous, but it had become clear that questions needed to be asked, and answered. I remember saying, “I don’t want to be angry at someone. It is hard enough to feel such immense sadness.” The more we asked our medical friends about standard processes in terms of Cody’s treatment, the more alarmed we became about how far from “standard medical practice” the midwife’s actions and non-actions were. Needless to say, the anger I had hoped to avoid showed up, as it become increasingly evident that Cody’s care had been far from optimal and had, in fact, contributed to his death. One thing I remember reading from the investigation report is that he almost certainly would not have died if even basic nursing care had been provided.

I have been able to reach a place of forgiveness, although that doesn’t make what happened okay. Basically, what began as a ruptured umbilical cord at the time of Cody’s birth, could have and should have had a very different outcome. It was not a split second error, but two hours of serious misjudgement and failure to act, by a very experienced midwife.

I have written about Cody’s story on a previous blog which is no longer online and also in posts here and here. Today, my grief has a different urgency to it.

Life Lessons

A song that I used to listen to in the early days of grief contained a line that said, “Perhaps someday we’ll understand the reason why you came.” I don’t really believe there is always a singular reason, and I don’t believe that he died “to teach us something” but I do know this: I have learned and grown so much through my loss and would not be where I am today if it wasn’t for having known, loved and lost my not-so-little baby. Cody’s life – and death – have transformed me and continue to do so as I reflect on the impact of his loss today.

  • I no longer assume that our days will be numbered in the sum of years. Some of us won’t even get a full day. Knowing that life is limited, and death is certain, can have a profound impact on the value we place on life.
  • Sometimes the order of things is turned upside down, and parents end up burying their children.
  • Putting too much faith in one medical person is not a great idea.
  • It’s important to have a circle of support around you. We are not meant to live like islands. My friends and family literally got me through.
  • Listen to your gut instinct. If you have an inkling about a thing, lean into that, find out more, speak up, take action.
  • Ideally, labour is just one day (well, hopefully only one day!) of many. Don’t treat it like the main thing.
  • You can grow through your grief, but you do have to go through it.
  • There is no shortcut to post-traumatic growth.
  • You will survive this.
  • If you don’t think you want to survive this, reach out to someone who does.
  • In addition to external supports, don’t forget to look within. You are stronger than you know.
  • You don’t have to be strong. You only have to be strong enough to take the next step. Micro steps are still steps.
  • Sometimes a “step” is just another breath.
  • Since you’re breathing, you might as well make the breaths count. Take a moment to notice – really notice – your next life-giving in-breath. And as you exhale, notice the release of… whatever you want to release.
  • This too shall pass, but the pathway through won’t necessarily be smooth sailing.
  • Along the journey, you will be climbing over boulders and clambering across obstacles. In the process, you will grow invisible muscles you didn’t know you had, that you’ve never needed before.
  • There is no timeline for grief.
  • There is no hierarchy in grief.
  • If you’re a person of faith, your faith may sustain you. Or you may find yourself questioning everything you thought you believed in.
  • If you’re not a person of faith, never say never. Grief can open up all sorts of existential and spiritual questions.
  • Grief exists in the wild and unpredictable shadows of life. It is a normal response to loss, but it will often feel all sorts of abnormal.
  • You will wonder if the grief ever ends, and then you may hope that it doesn’t, in case it means you forget them.
  • Your friends and loved ones may get sick of you talking about your grief.
  • You may assume your friends and loved ones are sick of you talking about your grief.
  • Some of your friends and loved ones will not get sick of you talking about your grief.
  • You may wonder how to bring up your struggles today, thinking they are sick of you talking about your grief.
  • They may wonder how to bring up the issue today, thinking perhaps you’ve forgotten about your grief today.
  • You won’t forget about your grief but sometimes it will fade into the background for a while… and then smack you in the face when you least expect it.
  • The days you think will be the hardest are often not as hard as the days you spend thinking about the days you think will be the hardest.
  • Sometimes nothing much will seem to make sense. Like the last sentence, perhaps.
  • Sometimes you will relentlessly try to make sense of things.
  • Sometimes you will wish you didn’t know, you will put your head in the sand, and do anything but attend to your grief.
  • If you’re putting your head in the sand, you might as well build a sandcastle and have some fun, because play and laughter can be as much a part of grief as sadness and misery.
  • When you feel strong, people may think you’ve forgotten, or it’s not that bad.
  • When you seem strong, you may be feeling anything but that.
  • When it feels like the pain will never end, you may surprise yourself by waking up one day and noticing the fog has cleared a little.
  • When everything seems meaningless, you will find a way to make meaning again.
  • You will never be the same, yet the you that you are becoming has been there all along.
  • Sometimes it will help to talk about your grief with someone who is somewhat removed from it all.
  • Grief is a natural part of life, but if life is feeling unmanageable, it is okay to reach out for help.

COVID Lessons

It may seem strange for me to be mentioning COVID-19 in a post about the death of my baby. In a nutshell, he taught me the most valuable lesson possible: life is precious. If we can do something to protect it, that is a good thing. Sometimes, our philosophy is given a more privileged position than action that we could take to protect our health. Let me explain.

Reflecting back on how torn I felt between possible medical interventions and my preferred birth plan, I have a different perspective on the situation. Hindsight can be a difficult thing to live with. At the time, I was passionately convinced of all the reasons why a natural birth was of great importance and a dream worth holding onto. I had “done all the reading”, I had listened to all the stories, and I was convinced.

My fears around childbirth, second-time round, were based primarily on my first experience. I had also read stories about how inductions are much more difficult and painful than natural labours and this was definitely a factor in my decision to do what I could to hold off an induction if at all possible. There was no way I was getting that needle inserted into my veins unless all other avenues had been explored!

And trust me, I explored all those avenues! I even resorted to consuming castor oil, more than once, in an effort to bring on labour. The thought of it almost makes me heave. Even now after all these years, I can almost taste it on my gag reflex.

My determination to avoid medical intervention persisted, in spite of being told that the risk of neonatal death increased significantly each day after 14 days past the due date. I was shown the graph depicting those numbers and was alarmed, but remained confident that I would be fine. Besides, I had been declared a “low-risk pregnancy” and a “perfect Birth Centre candidate” only the week before. I would be fine.

I wasn’t.

I did manage to avoid an induction!
I did manage to get my preferred birth story.
I just didn’t get a living baby at the end of it all.

I am not suggesting that all home births, or Birth Centre births, are bad. But I have a painful life experience that demonstrates just how quickly something can go wrong, even when we’re so sure it wouldn’t happen to us.

It can be very difficult to let go of philosophies and ideals that we are very passionate about. The medical establishment was taking the low road and I felt sure that mine was the better path. As I got closer to the “2 weeks overdue” mark, I felt trapped by the seeming inevitability that I would simply have to comply with an induction. It seems so silly now, to have held on so tightly to my resistance. I felt that I had no choice, and I was resentful.

A doctor I know lived and worked for many years in KwaZulu-Natal, South Africa. He told me after Cody died that he could not understand why, in Australia, we have medical intervention available for childbirth that is resisted by people who want a more natural birth experience. He recounted stories of women walking for days to try to reach the hospital, only to end delivering on the side of the road and the baby and/or mother dying. When I think about this, I realise how privileged my position was, that I had so much choice and so many options, yet I resented the fact that my option of a non-medical birth was disappearing from my grasp.

I haven’t spoken to that doctor for many years, but I am guessing that he would have similar views about Covid and vaccines. With the vaccination rate in much of Africa being as low as 4%, I imagine he would find it incredulous that people in Australia are rejecting the offer of a potential medical intervention as part of a public health initiative.

As I mentioned earlier, I believe, based on the evidence, that my midwife’s ideals about non-intervention and a non-medical birth clouded her judgment and led her to make decisions that had a direct impact on the disastrous outcome. Help was at hand, but it was not used. There was a team of highly skilled health professionals upstairs ready to jump into action as soon as the red button or pager were pushed, but they were not utilised.

At the end of the day, medical interventions which could have saved my baby’s life were withheld. During our court case which was settled out of court, our barrister subpoenaed the files of the other side and discovered that there were literally no health professionals willing to give evidence to support the actions and non-actions of the midwife. In contrast, we had an abundance and needless to say, the hospital was very keen to settle without facing a public court case! I mention this simply to point out that there is comfort in the evidence, and in the bulk of highly trained professionals agreeing in general on the best way out of this pandemic. There will always be some who disagree, but when the evidence stacks up clearly on one side, that is usually quite telling.

It is heartbreaking and frustrating to watch something similar happen with Covid. When medical interventions are available, but not taken up due to philosophical ideals and beliefs, it may seem like freedom of choice, but the health outcomes can be disastrous. If we can do something for the greater good and choose not to, we need to live with the consequences of that choice. In my experience, living with the consequences and the regret can be very difficult.

We can value our personal freedom and our right to choose
We can feel resentful and angry about government public health orders
AND we can make a choice to protect our health and the health of others

When You Don’t Want to Get the Vax

You are likely feeling trapped, resentful and angry. It is becoming inevitable that you may have to have the vaccination if you want to participate fully in society, and this is causing you all sorts of angst.

As a Registered Counsellor, I sometimes use a therapeutic tool called a “Choice Point”. It is based on Acceptance and Commitment Therapy in general, and the work of Dr Russ Harris in particular.

It’s probably best if I let him explain it with this fun little video:

 

So, with vaccine resistance, it might look something like this: Identifying the difficult thoughts and feelings that you’re experiencing, and working on identifying your values to help you take steps towards the life you want to live. There are skills that help with “unhooking” from the thoughts and feelings that tend to want to dominate our life when we are feeling stuck or trapped. It is too much to explain here, but the basic idea is that we don’t have to pretend that we are not feeling frustrated or fearful or angry. We can work towards mindful acceptance of those feelings, and still turn towards the life we want and the person we want to be.

You may also find Dr Harris’ book, The Reality Slap, helpful. In this book, he talks about how it can sometimes seem like life holds “endless setbacks and challenges; like reality is continually slapping you in the face and causing pain that you aren’t equipped to handle.” I’m fairly certain many of us can relate to this feeling at the moment! Dr Harris gives some helpful strategies for rebuilding life after setbacks.

If Cody’s short life has taught me one thing, it is to value the days and to know that even when life isn’t working out quite as we’d hoped, we can get through, we can be real about our feelings and our struggles, and we can learn lots of valuable lessons along the way

Affiliate Disclosure: As an Amazon Associate, I may earn commissions from qualifying purchases on amazon.com.au 

 

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