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.
- 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
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 relatively smooth sailing, 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.
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 – or perhaps black-and-white charcoal drawing – of this image.)
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 to 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 failed 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 of such a giant baby! When she should have been attending to his care or getting help, she was gloating about our successful delivery of such a large baby! 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. 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. We trusted the midwife and followed her advice rather than bravely making a decision for ourselves. Disclaimer: Someone told me once that “they would have taken their baby straight to the NICU” (which is a pretty rude thing to say to someone grieving the death of their baby.) 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.
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 me how he was. 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 she listen to me. I didn’t know what was normal for a newborn, as I’d fallen asleep after my first baby was delivered. (Part way through delivery, actually, but we’ll leave that tale for another day!)
- 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! (It was later discovered that this was the “last straw”, after which he was basically unsavable due to loss of oxygen while alone in the utility room.)
- 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 Neonatal Intensive Care Unit (NICU). 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 the 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.
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. (Remember his time alone in the utility room?)
Things weren’t looking good, but I was in 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 – RELIEF! Her familiar, loving face was so reassuring. 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 written 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. (When we later accessed the notes under the Freedom of Information Act, it was clear that the information about the cord had been added afterwards.)
The umbilical cord was retrieved from the bin, the efforts to save Cody continued, and I sat in my wheelchair in disbelief and despair. We began calling friends and family. When the paediatrician asked if we wanted to have Cody baptised, I was shocked and resistant – he was suggesting that 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. One day, I will ride in a helicopter in honour of Cody.)
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 guess I agreed. I don’t remember thinking coherently, but one thing I know is this:
- Regret: I wish – without a doubt – that I’d gone in the helicopter with my son. It’s been immensely painful to know that I opted out of being by his side as he fought for his life. I should have been with him.
We waited at the hospital with close family and friends for news. My husband took the call in a different room and was told the awful news that Cody had suffered 7 cardiac arrests during the 12-minute helicopter flight. I discovered later that he’d been asked if we wanted them to keep trying to save Cody or turn off life support and let nature take its course. My then-husband made the choice – without consulting me – to turn off Cody’s life support. He returned to the room and said that Cody hadn’t made it, and life as I knew it was forever changed.
The only way I’ve been able to make sense of the fact that I had no choice in the decision to turn off Cody’s life support is that my then-husband was trying to protect me from having to make such an awful decision. If I’m honest, it’s been deeply painful to know that I was excluded from the decision. The choice was made for me. Perhaps I would have resisted? We’ll never know now.
- Regret: I wish I had a voice in the life-or-death decision about my baby, and I wish I’d been with him as he breathed his final breath.
- Regret: Ultimately, 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. We were reunited with the nurse who’d held Cody while he died. Her name was Karen, too, and she’d worked overtime to wait for our arrival. 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 swept along on 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. And so I live with this regret.
- 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 to go down that path.
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.
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!
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 apparent “final stage” of acceptance (hint: there is no final stage). How could I ever accept what had happened, I thought? If I accepted it, did 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. Perhaps, realistically, it’s more resignation than acceptance. I found ways of integrating Cody’s short life and his loss into my life in a way I can somehow live with. I can’t stay stuck in a place of rage and bitterness. I need to move on with the grief.
Do I still grieve? Of course. I love and miss the one I could only hold for a short time. Sometimes, when his memory is at the forefront of my mind, I weep. Other times, it recedes more into the background – Cody’s life and death are part of the tapestry of life now. When I remember, I feel angry about what happened, but it doesn’t take hold of me quite the same way it used to. I can feel the wave of anger until it recedes again.
Grief for a child has been likened to carrying a stone in your pocket. Sometimes, you get poked by the sharp edges, and sometimes, you barely notice its presence. At 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. My barrister said we had a strong case for criminal negligence. But what would be achieved by me staying fused to blame and rage? Cody deserved better. And I do, too.
I’ve sometimes found comfort in this old hymn, which was written by a father after all four of his children died at sea.
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?
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!