Baby Loss: Grieving When There’s Someone to Blame

Baby Loss: Grieving When There’s Someone to Blame

Grief and Loss, Perinatal Loss

Last Saturday was the first day of Pregnancy Infant Loss Awareness Month. It also happened to be the 27-year anniversary of the day my baby died. As a grief therapist, I spend much of my week sitting compassionately with those who are grieving the death of a loved one or the ending of a relationship. As a mother and a human, I, too, am well acquainted with the shadowlands of grief. It’s my losses that called me to this work, and it’s my work that creates meaning from my losses. 

Neonatal loss is a lot less common than it once was. I remember reading a friend’s genealogy book and noticing one particular family who kept calling their children by the same name until one finally stayed alive! These days, it’s less common to know someone whose baby has died, particularly in the 3rd trimester or the early days after birth. 

In Australia:

  • Six babies are stillborn every day
  • Two babies die during the neonatal period (the first 28 days after birth) 

When a baby is stillborn, the cause is often unknown, and parents need to live with the ongoing mystery of unanswered questions. When a baby dies in the neonatal period (the first 28 days of life), it’s often due to premature birth, complications during delivery, or a medical condition. Sometimes, neonatal loss is due to negligence and should not have occurred. In these cases, parents need to live with the knowledge that someone was to blame. This isn’t an easy reality to come to terms with and can leave parents struggling with prolonged grief complications. But that doesn’t have to be the end of the story.

My baby’s death falls into the latter category: medical negligence.

I invite you to settle in while I tell you about Cody’s birth, death, and some of the lessons I’ve learned along the way. It’s a story of negligence, regrets, lessons, and finding peace. It may be triggering for some readers, so please decide whether this is right for you or not. I believe it’s time for negligent neonatal loss to be talked about, and yet I’ve grappled with how much to share. I write from a healed-yet-grieving place – to honour Cody’s short life – but mostly for you. I want you to know that whatever type of loss you’ve experienced, you can find peace and even grow in ways that may not have been possible without this tragedy.

Whether you’ve experienced the death of a baby due to unknown or natural causes, negligence, or a medical condition, I hope my story helps you come to terms with your loss and find a way forward through your grief and pain. There is no hierarchy in grief: your story is yours to make meaning from, whether the loss seems to others to be big or small. I write to show that you can move forward with your grief, even when there’s someone to blame. Grief may be your lifelong companion in some form, but you can grow through your grief, and you can find peace. 

Negligence and Regrets

Labour

I was determined to have a natural labour. My first labour had been one of those “labour from hell” experiences that lasted about 1,000 hours (I may be exaggerating), and this birth was going to be a completely different experience if I had anything to do with it. Well, that’s what my “birth plan” said, but birth plans don’t always work out the way we want them to. Realistically, my labour did go according to plan. It’s the post-birth stuff that went badly. Very badly. 

I was 13 days past my due date when I finally went into labour about 10 hours before a planned induction. I was so resistant to being induced that I resorted to about three doses of castor oil to get things going. It certainly did the trick, but I can’t say I’d recommend it! The thought of it still makes me shudder with disgust to the point I could vomit. 

I was looking forward to delivering in the Birth Centre, knowing that the labour ward and theatres were just upstairs if needed. We waited until midnight when we knew our favourite midwife was starting her shift. I felt so safe with her and was delighted that she would be the one to bring our much-wanted son into the world!

  • Regret: Castor oil! Not just because it was so disgusting but because if I’d given birth in the labour ward, Cody would most likely be my 27-year-old son rather than my dead baby.
  • Regret: Waiting for this particular midwife’s shift to begin. She was eventually found guilty of 12 counts of medical negligence by the Health Care Complaints Commission (and then promoted to the position of Nurse Unit Manager at the Birth Centre where Cody had died, which has never made any sense).

My labour was smooth-sailing as far as labours go, and we were ticking all the birth plan boxes. (It ended up being the shortest and easiest out of my five deliveries!) I couldn’t be happier and was ecstatic that we’d soon be meeting our new, much-wanted baby! As Cody was delivered, however, there was an unexpected sound – a “thud.” 

It was the sound of his ruptured umbilical cord dropping to the floor from my standing position. Houston, we have a problem! A big, big problem. 

Birth

Cody was born alive, thankfully! I only have one photo of him before he was placed on life support equipment and I’ve never shared it publicly before. In its unedited state, there’s a bit of blood, but I was incredibly blessed last year to be gifted with an edited version by Heartfelt. (One day I want to find just the right artist to create a watercolour painting of this image.)

Newborn baby

Although Cody was born breathing, he needed some extra oxygen to help him along. The midwife urgently instructed my then-husband how to access and use the oxygen equipment for Cody while she attended to me, thinking I was haemorrhaging.  My husband held the oxygen above Cody’s face, but the midwife yelled at him to press it down over his mouth and nose and force the air into his lungs. 

  • Problem. The midwife failed to get help by pressing the giant red button on the wall or the pager on her belt. Instead, she expected the baby’s father to undertake a (hopefully) life-saving medical procedure.
  • Problem. The midwife failed to suction the meconium from Cody’s lungs before the oxygen was forced into them. This was ultimately the cause of his death. 

About thirty minutes later, the midwife did the “Apgar” test, which should have been done at 1 and 5 minutes post-delivery. She also showed us signs of his respiratory distress: flaring nostrils, chest recession, and a “grunting” sound as he tried to breathe. Nothing was written in his clinical notes at this time, although one long entry was written up about 2 hours later, in which she falsely stated that his Apgar score was done at 1 and 5 minutes, with scores of 1 out of 2, and then 2 out of 2, for breathing.

  • Problem. The midwife was clearly aware of Cody’s respiratory distress but again failed to press the big red button on the wall or the pager on her belt to access help from the labour ward upstairs. 

Cody weighed in at a massive 5kg (11 pounds 5 ounces), and the midwife was impressed that we’d had a natural delivery. She told us that babies larger than 10 pounds are often taken to the Neonatal Intensive Care Nursery (NICU) for observation and asked us whether we’d like to have more time with him first. We were on a post-delivery high and deferred to her, saying, “You’re the midwife. We trust your judgment. What do you think?” I’ve never forgotten her response: “It’s just a silly hospital rule, don’t worry about it.” She wanted to give us bonding time. I’d rather have a lifetime with my living son.

  • Problem. It was the midwife’s responsibility to follow protocol. She had the medical knowledge to inform her decision. I personally believe she had a significant bias against medical intervention, which interfered with her clinical judgment. 
  • Regret. Trusting the midwife and following her advice, rather than bravely making a decision for ourselves. Disclaimer: Someone told me once that “they’d have taken their baby straight to the NICU”. It’s easy to say that in hindsight when you haven’t just given birth to a massive baby, and you don’t have hormones surging through your exhausted body. I wasn’t in a position to make a logical, informed decision. I had a great relationship with the midwife I’d been seeing throughout the pregnancy and trusted her judgment as a health professional. 

Early hours

Once Cody and I were stabilised, the midwife draped a blanket around us to “warm him up a bit” and made me a cup of tea (that fixes everything, right?). I was instructed not to breastfeed him as he “might have to go to the nursery a bit later on.” 

For the next hour and a half, the midwife occasionally popped her head into the room to ask how things were going. One comment I specifically recall saying was, “He makes a sort of moaning sound when I lift his legs up” (his legs were heavy and flopping down). This is alarming, on reflection. She seemed to think nothing of it.

  • Problem: I wasn’t listened to
  • Problem: I was given the responsibility of determining Cody’s state
  • Regret: I wish I’d insisted that she listen to me. I was unaware of what was normal for a newborn as I fell asleep after my first baby was delivered
  • Problem: The midwife failed to provide accurate monitoring or assessment of a macrosomic (extra large) baby, even though she later stated in an investigation that she was experienced and aware of the additional risk factors of macrosomic newborns

Eventually, it was time for a much-needed shower. The midwife said Cody was still a bit cold, so she would attend to that while I got cleaned up. After my shower, my husband went out to get some things from the car and was surprised to find the midwife sitting outside smoking and writing up the clinical notes (finally). 

“Where is Cody?”

“Oh, he’s in the utility room on a warming trolley.”

Subtext: He was ALONE! 

  • Problem: Cody was unwell enough to need medical intervention, yet he was left alone and unsupervised.

Finally Getting Help

It was decided that Cody would be taken up to the NICU ward. First, my husband brought Cody to me, so I could see him (I was barely able to walk). I noticed that he wasn’t a good colour, his mouth was wide open, and he wasn’t breathing normally. Something clearly wasn’t right. During the fateful walk to NICU, my husband said to the midwife, “It’s like he’s gasping for air.” Her response was, again, alarming: “You’d be stressed, too, if you’d just been delivered and were such a large baby.” 

Upon arrival at the nursery, the midwife laid Cody down on the bench, opened the blankets and said the words I’ve never forgotten (and that came back to haunt me for many years):

“Oh my God, he’s not breathing.” 

The NICU staff went into hyperdrive in their efforts to try to save Cody’s life. A paediatrician was called in urgently, blood tests were taken, and resuscitation equipment was attached to Cody’s not-so-little body. 

Newborn baby on life support

When the blood tests came back, the paediatrician yelled out in alarm: “Who the hell did these Apgars??” 

  • Problem. The midwife lied in the notes about the timing and results of the Apgar scores, stating that at 5 minutes post-delivery, his breathing was perfect, yet in reality, he was having oxygen forced into his lungs at that time.

The paediatrician said the blood tests indicated severe acidosis that was incompatible with life but that they’d do all they could to save him anyway. (And they certainly did!) He also said that Cody must have been without oxygen for some length of time for the results to be so bad. It was later determined that Cody’s breathing must have been minimal for at least 20 minutes while in the utility room alone.

Things weren’t looking good, but I was in complete denial that he would die. 

We knew a midwife at our small country hospital and asked if she was working. She came straight in to see us and it was like balm for my soul to see a familiar, loving face. I still cry when I think of how supportive she was on that fateful morning. When we mentioned the ruptured umbilical cord, she was shocked as it wasn’t mentioned in the notes and hadn’t been sent away for testing.

  • Problem: The midwife had falsified information in the clinical notes about what had happened after delivery

The umbilical cord was retrieved from the bin, the efforts to save Cody continued, and I sat in my wheelchair in disbelief. When the paediatrician asked if we wanted to have Cody baptised, I was angry – almost insulted – because he was suggesting that perhaps our son would die! I couldn’t make space for the thought that this might happen.

Getting Even More Help

An incredible team of specialists from the Neonatal Emergency Transport Service came to take Cody by helicopter to the Children’s Hospital in Sydney. It took them hours to stabilise him before being able to airlift him by helicopter. (And it took me at least 10 years before I could look at a helicopter without crying.) 

We were faced with a difficult decision: there was only room for one of us in the helicopter. From memory, my husband thought we should stay together rather than just one of us being left behind. It may have been a mutual decision? I don’t remember thinking coherently, but one thing I know is this:

  • Regret: I wish I’d gone in the helicopter with my son.

We waited at the hospital with close family and friends for news. My husband took the call, and he was told the awful news that Cody had suffered seven cardiac arrests during the 12-minute helicopter flight. He was asked whether we wanted them to keep trying to save Cody or to turn off life support and let nature take its course. He made the logical choice and told them to turn off the life support, then came to tell me the news that Cody hadn’t made it. I guess he was trying to protect me from having to make such an awful decision, but If I’m honest, I’ve struggled with having that decision made for me. I’m not sure I could have made it, but I didn’t have the opportunity to try.

  • Regret: I wish I’d had a voice in the decision
  • Regret: I wish he hadn’t died! 

Grief When There’s Someone to Blame

And so began the journey no one wants to take: trying to make sense of and adapt to the unexpected death of a much-wanted baby. I checked myself out of the hospital as I couldn’t bear to stay with all the mothers and babies, and we made the hour-long trek to the big city hospital, where we met with the nurse who’d held Cody while he died. Her name was Karen, too. Our parents supported us and grieved with us, and we introduced our 21-month-old son to his baby brother. 

I found it difficult to touch Cody at first, even though they’d kept him warm in a beautiful bassinet, but soon I couldn’t get enough of him. I didn’t want to let him go and couldn’t bear the thought of leaving him behind. As his body started to go cold and stiff, my husband wanted to go. It’s a personal decision, and I went along with this but really didn’t want to. I didn’t voice a different preference at the time but I realised afterwards that I wish I’d stayed, and stayed, and stayed. It was incredibly difficult to leave. 

  • Regret: I wish with all my heart that I’d spent more time with Cody.

The next few days were a blur. Our house was filled with friends and family who came to visit: we were carried by a sea of support, and I’m forever thankful. 

My husband didn’t want to see Cody’s body before the funeral – it was just too painful – and I went along with this decision. I wasn’t strong enough at the time to speak up, let alone know what I really wanted. But one thing I know now – for sure – is this: 

  • Regret: I deeply regret not going to the funeral home to see my son one more time

Not just sadness – anger, too

I remember the day we received a phone call from the paediatrician, who was on holiday. He said, “I don’t want to start a witch hunt, but it seems there is something really wrong here. Either Cody had a condition we don’t yet know about that caused his health to deteriorate rapidly, or something very wrong has happened.” He strongly suggested that we have an autopsy. 

I clearly remember saying to my husband, “It’s hard enough to be sad; I don’t want to be angry as well.” 

Our trust in the midwife had been strong – it was difficult to comprehend that she could have been negligent in Cody’s death. We even invited her to the funeral and spoke about her glowingly. (Another regret! Shock can do strange things to a person.) Slowly, we started asking questions of health professionals, including friends who were nurses: 

  • “Is it normal to have a parent try to resuscitate their baby?”
  • “What’s the normal process when an umbilical cord ruptures?”
  • “Is it normal to withhold breastmilk from a macrosomic baby?”
  • “Is it normal to throw away an umbilical cord and not write about it in the notes?”
  • “Is it normal to give an Apgar score of 100% for breathing while oxygen is being given?”

The answers started coming one after the other, after the other: No, that’s absolutely not normal. No, that shouldn’t have happened. No, no, no.

We began to realise that our “favourite midwife” had made some significant blunders. Not just one or two accidental oversights or split-second decisions but many decisions over the space of two hours resulting in a scenario in which our baby lay dying on a metal trolley… alone. While I showered and the midwife “had a smoke”, my baby was barely breathing.

The Health Care Complaints Commission found the midwife guilty of gross negligence, stating that had she provided even basic nursing care, he most likely would have lived. Our legal team advised that we had cause to sue for criminal negligence, but we didn’t want that.

And the anger set in. 

It took time to work through this… I knew I couldn’t live with rage forever, but it also begged to be felt. It begged to be released. It felt unbearably unfair. This shouldn’t have happened. Our baby shouldn’t have died. 

I’ll write more another time about the process of working through the anger, but for now, I can say that I did find freedom from the anger that I thought might never go away.

Releasing Regret

Some things that happened were within my control, and I made some choices that I now regret. At the time, however, I did what I thought was right. 

We don’t get do-overs. There is so much about loss that we simply must accept or live with the ongoing anguish of non-acceptance. The process isn’t necessarily simple, easy, or brief, but it is essential if we’re to find peace.

I knew I had to forgive myself. I knew I had to set myself free of the regret, or it would eat me up inside. I had to accept that choices were made in good faith and with the best knowledge and capacity that I had at the time. Would I change some things if a do-over was possible? Oh yes, absolutely! But that sort of change is outside of my control because it’s in the past. 

The process of learning to live with regret and let me off the hook was a long one. Sometimes, I need to apply the lesson again. And again. Self-compassion, I’ve realised, is a gift that makes this possible. And a healthy dose of therapy!

Forgiving the Midwife

This issue is definitely a post for another day, but for now, I’ll say that I was eventually able to do this. Forgiveness was the right choice for me, and it wasn’t a one-time deal. It wasn’t easy or instant, but it was essential for my healing. It’s a personal choice, but I knew I couldn’t live with myself if I held onto my feelings toward her forever. I needed to release myself from the effort to hold her hostage because the chains were actually around me, not her.

Finding peace beyond blame

Early in my grief journey, I remember reading about “the five stages of grief” (which I later realised is an outdated view of grief). For a while, I railed against the “final stage” of acceptance. How could I ever accept what had happened, I thought? If I accepted it, didn’t that mean that what the midwife did (and didn’t do) was ok?

With time, therapy, and a lot of work on me, I finally reached a place of accepting that this was now part of my life story. I found ways of integrating Cody’s short life and his loss into my life in a way I could live with. I didn’t need to stay stuck in a place of rage and bitterness. 

I can honestly say I am at peace with this part of my life. Do I still grieve? Of course. I love and miss the one I could only hold for a short time. Sometimes when I remember, I weep. Other times I don’t. Sometimes when I remember, I feel angry about what happened, but it doesn’t take hold of me. 

Grief for a child has been likened to carrying a stone in your pocket. Sometimes you get poked by the sharp edges, sometimes you barely notice its presence, and other times you want to hold it for a while. When the stone was put there because of someone else’s wrongdoing, you may hate the stone for a while and try to throw it away, but you eventually realise it’s part of the fabric of your life now and a reminder of the love you have for the one who is physically gone. 

Was there someone to blame for Cody’s death? Yes, a court of law and the Health Care Complaints Commission determined it was a case of negligence. But what would be achieved by me staying fused to the blame and seeing myself as a victim? Cody deserved better, and so do I. 

I’ve sometimes found comfort in this old hymn, which was written by a father after all four of his children died at sea.

Through my loss, I’ve learned and grown so much. I value life more. I value my living children even more than I think I may have if this hadn’t happened. I’ve witnessed the empathy my children have in their hearts through growing up in a family acquainted with unexpected, untimely loss. I’ve learned not to take life for granted.

At one of the first SANDS support group meetings I went to after Cody died, I saw a brochure with a quote printed on the front cover, saying something like, “Life and death are part of the same mystery.” Cody has taught me that death is as certain as life, and we don’t know when it will come. This thought helps me embrace life more fully (most of the time!) and appreciate my loved ones more deeply. 

I’m thankful for my living children. I’m thankful for those who walked the path of grief with us in the early days, many of whom still remember and reach out every year. I’m thankful for the therapy I’ve had over the years, which helped me work through the pain and find hope again. I think this is particularly helpful when we are grieving a loss where there’s someone to blame. 

How about you? What lessons have you learned from your grief and loss journey? Have you grown through your grief, or are you feeling stuck? Would you like to share something about your experience in the comments below?

If you feel the need for support to help you with your grief, you may find some of these organisations helpful.

SANDS – Miscarriage, Stillbirth & Newborn Death Support

Red Nose – Grief & Loss Support

Bears of Hope – Pregnancy & Infant Loss Support

Pink Elephants – Miscarriage & Early Pregnancy Loss

Griefline – Free Grief Support

If you’d like to talk to someone who understands something of what it’s like to walk through the shadowlands of grief, please get in touch. You’re welcome to book a complimentary 20-minute enquiry call to help you decide if you’d like to have online counselling with me. I’m based in Melbourne, Australia, but am currently only working online. I’d love to hear from you!

What Grief is Teaching Me About The Pandemic

What Grief is Teaching Me About The Pandemic

Grief and Loss, Perinatal Loss

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 

 

25 Things I’ve Learned Since My Baby Died

25 Things I’ve Learned Since My Baby Died

Grief and Loss, Perinatal Loss

On this day, 25 years ago, my second son, Cody, died. He had lived for just 9 short hours but spent most of them on life support. To say our hearts were broken would be a gross understatement.

It had been a healthy pregnancy and my easiest delivery out of 5 babies, which is slightly surprising, given that he weighed in at 5 kilograms (that’s about 11 and a half pounds)!

Two weeks overdue, with an induction looming, I finally went into labour with the help of some castor oil (the thought of which still makes me heave! It is NOT a method I would recommend!). I held off calling the hospital until midnight because I was waiting for my favourite Birth Centre midwife to start her shift. That is one of many regrets I’ve had to learn to live with, as it was her gross negligence that led to his unnecessary death (as determined by a Health Care Complaints Commission inquiry process).

Cody was born breathing but was not given the care he needed after his umbilical cord ruptured during delivery. The big red emergency button, which would have had extra staff from the antenatal or labour ward immediately on hand, was ignored. For 2 hours.

He needed a bit of help with his breathing, and the task of “bagging him” with oxygen was given to my husband while the solitary midwife attended to my needs. The Apgar scores, which should have been taken at 1 and 5 minutes, were done about half an hour later, due to the aforementioned things going on when he was first delivered. The midwife wrote in her notes that the Apgar measures been taken at 1 and 5 minutes and gave him scores of 8 & 9 out of 10, with a 2 out of 2 for the respiratory category. The mind boggles.

For almost 2 hours, I was encouraged to hold him in my arms under a warm blanket because the midwife noted he was “a bit cold”. For almost 2 hours, my comments such as “he seems a bit floppy and his legs are heavy” were ignored. For almost 2 hours, I was told I could not breastfeed him as he may later need to go on a feeding tube in the nursery. For almost 2 hours, the midwife occasionally popped into the room to see how things were going, or to bring me a cup of tea to “help warm him up”. I’m not sure what she was doing the rest of the time, as it was the middle of the night and the Birth Centre was deserted, apart from us. For almost 2 hours, we trusted our favourite midwife, who told us the hospital policy of taking babies larger than 10 pounds to the nursery was “just a silly hospital rule.”

I eventually showered, while the midwife finally took over Cody’s “care.” It was later discovered that she’d left him, alone, in a storage room on a warming trolley, while she sat outside smoking and writing up one long entry of clinical notes covering 2 hours of his life.

When he was finally taken to the nursery, she placed him down, opened his blankets and declared,

“Oh my god, he’s not breathing!”

Those words have haunted me for 25 years.

The midwives and paediatrician in the neonatal intensive care ward tried valiantly, for hours, to save our baby’s life. The NETS (Newborn Emergency Transport Service) team were brought in to help and flew him by helicopter to the children’s hospital, but it was too late. He was unable to be saved.

And our hearts broke.

 

Over the past 25 years, I have learned to live again.

For a while, I wondered if I would.
For a while, I wondered if I wanted to.

 

25 things I’ve learned along the way.

  1. When you’ve had a baby die, you’re likely to be friends with people who are having babies. You will have to face soooo many baby showers, toddler birthdays and social gatherings filled with other people’s babies and children. Later, you will have to watch your friend’s kids grow up and do all the things your child won’t get to do.
  2. Every second person seems to be a pregnant woman or a parent with a baby.
  3. Birth Centres are lovely, but a bias against intervention may cause your midwife to make bad decisions. Very bad decisions.
  4. 2 hours of bonding is nothing compared to a lifetime of living without your child.
  5. Labour is only 1 day of your life (hopefully!) and your perfect birth plan will pale into insignificance compared to everything that comes afterwards, whether good or bad.
  6. It’s important not to place 100% faith in one health professional. Listen to your intuition. Insist on a second opinion.
  7. Forgiveness is possible. Really. And it’s not about them.
  8. Coming to terms with “if only” takes time. Sometimes a long time.
  9. Deep, heart-wrenching sorrow changes you. Not necessarily for the worse. And it can be survived.
  10. There is no hierarchy of grief. Whether your loss happened at 6 weeks’ gestation or 42, whether you had a stillbirth or a neonatal death, whether you had to make an unimaginably difficult choice or the death was chosen for you, the grief you feel is the grief you feel.
  11. So many people will say unhelpful things. One of the unhelpful things said to me was, “Oh well, at least he didn’t live for 6 months. Imagine how hard THAT would be!” Some of the unhelpful things are said with good intentions, and some are really just clueless. People don’t usually mean to cause hurt.
  12. There are people who love you, who care deeply about you and what you’re going through. You may want to push them away sometimes and hold them close at other times. You may think they don’t understand, and they possibly don’t, really, but they are likely trying to help the best way they can. It helps to tell people how they can help you. Yes, it would be nice if you didn’t have to, but if they don’t know, they don’t know. If you know what you need, don’t hesitate to ask.
  13. If you don’t have people around you who are providing the care and support you need, you reach out to one of the many support services available, such as Sands Australia. I did.
  14. It can be difficult for people to know when to raise “the issue” and they may hesitate if it seems like you’re having a good day. Social media can be an easy way to flag that you’re having a hard day, and people are then likely to reach out to offer some support. If not, you will survive that too, but it will hurt.
  15. Other people’s lives will go on much more quickly than yours, and there will be times when it seems that no one remembers. It will really hurt at first, but slowly you will realise that it’s because you love your baby more than anyone else ever will. The bond you have with your baby who died (at whatever stage of pregnancy, or after birth) is incredibly special, so it makes sense that you’ll hold a place in your heart for your baby that others won’t. And that’s okay. Also – there will likely be a select few who will always remember. And that’s always incredibly meaningful. In fact, while writing this post, I have received a message from my mother, who has been to Cody’s grave this afternoon – I live in a different state now, and other messages from great friends.
  16. Rituals of remembrance are a beautiful thing and help to keep the love close to your heart.
  17. If you have a subsequent pregnancy, it will likely be… complex. You will have all the feels and be told many platitudes such as, “It will be fine this time.” It might not be. You need to learn to live with that. Holding on to hope, while acknowledging the complete absence of guarantees is a bit like straddling a see-saw. (Side note, for me: I gave birth to my rainbow baby less than 1 year after Cody’s death. Did I mention complex? His birth – and his ongoing life – have been like balm for my soul.)
  18. If you are blessed with another baby or two, you will never, ever forget the one who died. You really do have enough love. You really can hold a special place in your heart for the one who died too soon, and also delight in the other child or children. I mean, REALLY delight in them. My love for my 4 living children is even stronger than I think it would have been if Cody had not died.
  19. You may not be able to have another child. That is a whole other experience and off-topic for this post, but I will say this: you will always be a mother. Always.
  20. You can grow through your grief. You can honour your grief and also become more. The lessons you learn can change and grow you into a better version of yourself. Your life does not need to shrivel up, even though right now you may just want to curl up in a ball. You can learn to live again.
  21. C.S. Lewis was onto something when he spoke of the shadowlands of grief. It really does feel like living under the shadow of a dark cloud that follows you everywhere. But over time, the light really does get in. The clouds will slowly clear and you will eventually feel the heavyweight of grief’s shadow begin to lift.
  22. Death is not the end of a relationship. Life really does go on. I may have already said that, but it bears repeating again because if you’re in the early stages of grief, it may be some time before you can believe it.
  23. There is no time limit to grief. It’s not something you get over. It’s something you learn to live with.
  24. Did I mention living? Grief is something you feel when you are alive. Over time, you will find meaning in your life again; you will find ways of living again. And it will be awesome!
  25. You will be okay. I know, because I am.

24 Years Since My Heart Broke

Grief and Loss, Perinatal Loss

I was going to write a post today about how to help someone who is grieving but I just can’t do it. Because my own grief is very present for me right now and I need to honour that. All I can do tonight is say, hear me, please. Listen to me. I have a story to tell.

Assumptions 

It took me about 15 months to conceive my first child, including one early miscarriage along the way. After a difficult birth, it would have been tempting to quit the baby-making days! But alas, my heart was full, I had so much love to give, and I knew I wanted more. 

My second pregnancy was pretty easy, really. I was loving being a Mum, and so excited to be with-child while parenting a toddler (and a wee bit exhausted). All the checkups went well and it was progressing without a hitch. 

By the time the due date was approaching, it became evident I was going to have a big baby (about 10 pounds, the obstetrician consulting to the Birth Centre thought). Nonetheless, he said I was a “perfect birth centre candidate” and it was full-steam ahead for a delivery in the natural setting of the Birth Centre, with the midwives we had been seeing throughout the pregnancy. I was elated!

Having been induced the first time, and in labour for about 1,001 days, I was so excited that it was looking set to be a natural delivery this time. It was going to be amazing! 

What helped us in our grief?

I think it would also be wonderful to share some of the helpful, supportive, memorable things people said or did for us. This may help others feel more confident about coming alongside someone who is grieving. It may encourage them to “have a go” at helping, rather than holding back.

By speaking up about what helped us in our grief, we can pave the way for people to show more compassion and support for others who experience the pain of heartbreak.

I’ll start.

What Helped Me in my Grief

When my baby died, there were some words said that caused pain. They were probably well-intentioned but often missed the mark, or worse. There were times when I ended up comforting those who weren’t sure how to comfort me. (“It’s okay, I know it can be really hard to know what to say”). Or I swallowed my shock at what had just been said.

BUT there were also a multitude of ways people showed their love and compassion that really, really helped. For example (and this list is not conclusive):

  • The midwife/friend who arrived at the hospital for her regular shift while our son was being put on life-support, who sat with us, cried with us, and was a literal lifeline in a confusing, scary situation.
  • Those who came to the hospital while we waited for our son to be air-lifted to the children’s hospital, who held us when we discovered he had died not long after arrival.
  • A friend who rang the funeral parlour for me, because I couldn’t get the words out without sobbing.
  • The (same) friend who came to the funeral parlour and sat with us while we made arrangements for our son’s funeral.
  • Those who simply visited and sat with us in our pain!
  • People who turned up with toilet paper, toys for our toddler, tea and coffee, and many many tissues, so that we didn’t have to think about such things while our house was filled with supportive friends and family.
  • Those who washed dishes, took out rubbish, cleaned our house, mowed our lawn and did who-knows-what-else while our hearts were so broken that we couldn’t think about the practical things!
  • A 3-page letter from a friend who had experienced a similar loss, telling us all the things she wished she’d done or not done after her baby died.
  • The friend who hid her newborn at the house next door during the wake,  sneaking out to nurse and feed him, so I wouldn’t be confronted by seeing a 2-week old baby when my baby was in a grave.
  • My parents and parents-in-law, who grieved for their grandson and their own children at the same time, and carried their own pain while helping us survive ours.
  • People who changed my toddler’s nappies! I don’t even know who you were, but I figure someone did it because I don’t remember doing anything like that for about two weeks!
  • The thoughtfulness of a friend who gave us a baby congratulations card, in recognition that even 9 hours earth-side is something worth recognising. I still have that card, 24 years later.
  • My sister-in-law’s gift of a beautiful hand-stitched memento, which we placed in the coffin with our baby.
  • The friend who made a beautiful outfit for my son to be buried in.
  • The (same) friend who re-made the outfit because a 5kg baby just can’t fit in normal newborn sizes!A friend's gift helped me in my grief
  • The friend who carried my baby’s coffin to the graveside so tenderley, knowing that this could just as easily have happened to his own 2-week old baby.
  • Friends who patiently answered our relentless questions about “what was normal” in maternity practices when we were coming to terms with the awful realisation that our baby probably shouldn’t have died.
  • The friend who understood how hard it was for me to visit her newborn in the same maternity ward where my baby had been born.
  • A sensitive, compassionate friend who waited until just the right time (about 5 months, from memory) to ask me if I’d like to hold her baby, knowing that our babies should have been growing up together.
  • Those who patiently listened, cared and prayed as I railed relentlessly against this unfathomable, unimaginable loss.
  • Friends who took their kids to our baby’s grave and left little gifts, without saying a word.
  • So many letters, art, gifts and cards! A They are still treasured, even after 24 years.
  • Friends and family who kept on remembering our baby’s anniversary, year after year after year.
  • A new friend who visited me on my baby’s anniversary the first year after we moved away from the town where he’d been born, died and buried. She simply asked me, “Tell me about Cody? I wish I’d met him.”

I could go on. And on. and on. And I’m sure I’ve missed so many people who reached out with love and support.

What Helped You?

To those who have travelled grief’s pathway, what are some of the memorable ways people cared for you? Let’s remember the good and helpful things, and inspire others to reach out, rather than hide from, their bereaved loved ones.

Add your voice to the comment box below, and let’s bring to light the positive stories of what helped us in our grief.

Do You Need Help?

Are you struggling to cope with your grief, whether it be through the death of a loved one, relationship loss, pet grief, or any other type of loss? It can be helpful to seek support from a grief counsellor. If this is you, please reach out for support.

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