In this series of personal stories we hear from parents who have suffered pregnancy or baby loss. We hold space for loss and grief, and we remember our babies gone too soon.
In sharing their stories, these parents are beginning to exorcise the triple demons of stigma, silence and ignorance that afflict so many conversations in the perinatal bereavement space.
Parents share their journeys and the lessons they have learned about grief, parenthood, friendship and living after the death of their baby. They tell us how they have changed, who they have become, and what truly matters now.
Baby Mackenzie
In August 2022, we were over the moon to find out that we were going to be parents. The pregnancy was exciting in the beginning. We got the NIPT done and found out we were going to have a boy. We announced we were pregnant at 12 weeks, at our wedding anniversary party!
I had morning sickness and I was tired, but oh so hopeful. We had scans, blood tests and everything was coming back normal, until we hit 20 weeks.
We had the ultrasound and I had a feeling something was wrong. I didn't even notice his heart was on the wrong side of his body. But the sonographer assured me that everything was ok.
We had picked out his name fairly early - Mackenzie Luke (the middle name is after my brother in law, who passed away 4 years prior). Our baby Mac. I remember my mum was with me for that scan - Mackenzie was her first grandchild.
The next day I went to work, then home for lunch as I usually did. It was the day of the Wiambilla shooting, which I remember reading about. One of the officers was my friend's brother. I then got a call from my obstetrician asking if I had time to talk. She proceeded to tell me that the scans indicated there was a problem with Mackenzie's lungs, something called a CCAM (congenital cystic adenomatoid malformation). She said it likely would mean he would need surgery before his first birthday, to remove the affected lung, and that I would need to go to Brisbane for further scans with a MFM (Maternal Fetal Medicine Specialist). I didn't even know until that day that there was a higher qualifications than an obstetrician. Shocked was an understatement. My mum had been on her way back home but she immediately turned around and came back. My husband and I were in shock. I'm pretty sure I cried myself to sleep that night with worry.
I'd done everything "right": I had taken the vitamins, kept fit, didn't eat soft cheese or deli meats. Why was this happening to us?
Still, it wasn't a major issue, or so we thought. Many babies are born with CCAM's all over the world, we soon found out. It was very unlikely that his condition would lead to anything sinister. Just liked webbed feet.
The next day we had an appointment in Brisbane with the MFM. I had more ultrasounds, then the MFM came in to discuss the results. We were told that we would need close monitoring - every 2 weeks from now on. As long as Mackenzie didn't develop hydrops (fluid around the heart and under the skin, a sign of heart failure), his prognosis was great, very unlikely to be fatal.
So we had more scans. The CCAM kept growing, but so did he. The medical team said the CCAM usually stops growing by 30 weeks. But it did not. At our last scan before Christmas the medics began to question their original diagnosis. They could no longer clearly define his diaphragm. They feared another potential diagnosis might apply instead called CDH (Congenital Diaphragmatic Hernia). So we needed to have an MRI.
I had it just after Christmas. The scan took a long time. I had to keep very still and hold my breath at times.
We didn't get the results straight away. I remember crying myself to sleep again, telling my husband "I can't loose this baby".
We finally had a phone appointment with the neonatal surgeon, who confirmed Mackenzie's condition would only require a straightforward surgery called a lobectomy when he was a few months old. So his condition was a CCAM - thank goodness we thought, as CDH was a much worse prognosis.
For the next scan I was with my mother in law. I drove to Brisbane. I'd seen my baby on the monitor so many times now, so as soon as his body came into focus, I saw the fluid. The sonographer confirmed it was fluid and I started crying because I already knew what that meant. It could be fatal. Most babies who develop hydrops do not survive. The MFM came in and confirmed our concerns.
We discussed treatments. Either we could have an in utero surgery to drain the fluid in the CCAM or we could opt for steroids. Neither course of action was super effective. My mother in law made me drive to the Mater where we saw Prof. Kumar. After yet another scan, he said the type of CCAM Mackenzie had couldn't be drained and that our only option was steroids.
Even though they weren't very effective, and on top of that I could have side effects, really, I didn't have a choice. It was the only thing we could try to save his life, which is such an odd thing to think about before your baby is even born.
I had one lot of steroids then and there. Then they sent me home and told me to monitor his movements closely. I remember having to call my husband, who was at work. We were told to prepare for an early arrival. Mackenzie was in the breech position, and always had been.
My mum came back to Toowoomba the next day. I was given a medical certificate for the next week, as I was only 26 weeks pregnant. I let my work know I wouldn't be coming in. The next day I saw my OB, who gave me the next lot of steroids.
We spent the next week frantically setting up the nursery and buying baby things - we didn't even have a pram yet. We found 0000000 and 000000 preemie baby clothes. I packed my hospital bag and the baby bag just in case.
We were told I'd either have to deliver in Brisbane, as he would need to go into the NICU, meaning I'd have to find another OB. One of the MFM's I'd seen, Dr. Alexa, was an OB at the Mater, so we had a call with her to organise for her to deliver Mackenzie when the time came.
The following Monday, mum, Matt and I went to The Mater and had more scans. The hydrops had started to clear up a little, but unfortunately my cervix had started to open!
I was immediately admitted to hospital and put on bed rest. The plan was to be in there for the next 13 weeks to avoid the affects of gravity on my cervix. I was on blood thinners due to clotting risks, as I couldn't move around.
The following day we had a meeting with Dr. Richard, the neonatologist. He was such a lovely man. He explained that if I were to go into labour this week, Mackenzie's chance of survival would be very low because of his immature lungs.
Each extra day inside the womb gave him an extra 1% or so chance of survival. This was very hard news to hear. I felt guilty that my body was going into labour, and that there was nothing I could do to stop it. I was grieving for my baby who wasn't even born yet.
On the Thursday I had to do a GTT and have another scan. This confirmed that my cervix was shortening and opening more. I was put on even more strict bed rest. I was confined to the bed except for bathroom breaks. That same afternoon I was diagnosed with gestational diabetes, too.
Dr. Alexa had visited me and discussed that due to Mackenzies condition, he would have to be delivered by caesarean. This was the safest way for him, firstly because he was breech, and also because he wouldn't be able to take a breath. A neonatologist needed to be present for the birth.
I had a terrible night's sleep that night, terrible back pain. I was asking for pain relief and heat packs all night; I thought I was having cramps. The midwives said the internal ultrasound could cause that. By the Friday morning I didn't have an appetite.
I remember mum coming to visit and saying, "I think you're having contractions, not cramps." So a midwife came and watched over me and agreed it was time to call the OB.
The OB arrived mid-afternoon, and confirmed I was 2cm dilated and I immediately needed to go to the birth suite for medication. My partner Matt was due to come down that afternoon after work. Some friends came by to visit just as I was being wheeled down. I must have had the most haunted/shocked look on my face.
I was hooked up to a drip of magnesium sulfate, a drug used to help with brain development in premature babies. But it needs to be given for a few hours to be effective, I was also given more steroids and morphine for the pain. Matt finally arrived.
Dr. Alexa explained she would need to do a classical cesarean. A cut into my uterus that "wasn't ready" could cause issues for future births and may affect my ability to have any more children.
She also said that after my next child they may need to do a hysterectomy. Really hard to hear all that, when you are about to give birth to a child who might not survive.
She explained that it was possible Mackenzie wouldn't survive birth. We then talked with an anaesthetist, who explained that the safest option would be to put me under general anaesthetic. After he left, I remember saying to Dr. Alexa that if he might not live for long, I didn't want to be asleep for his only living moments. She agreed that we could do the procedure under local spinal anaesthetic instead.
I was having pretty regular contractions for some time, but then the medication seemed to kick in and they slowed down, almost stopped. The OB went home and said see you tomorrow. I was still only 2cm dilated.
We tried to get some sleep, but I felt sick. I was thirsty but I wasn't allowed to drink anything. I remember the midwife Andrea.
The clock struck midnight. I remember thinking, yay, he has another 1% chance of survival.
The contractions came on hard and so, so fast. Dr. Alexa was called, she barely made it in time. I was 10 cm dilated, so there was no time for a cesarean or an epidural. I was told to push, and the next thing I knew my waters broke. There were so many people in the room. The gas wasn't helping, I was screaming. I remember a midwife telling me to stop screaming and start pushing.
He came out feet first, and I remember the last push was like pushing out a hot bowling ball. Dr. Alexa did 1 minute of cord clamping.
He was silent, he was still. I remember asking if he was alive and she said yes. He was whisked away into the neonatal resuscitation room.
Just as he was wheeled in there, the neonatologist walked into the room to intubate Mackenzie, which we were later told took a few goes. I told Matt to go with him. Matt got to cut the cord, some nurses took photos, which they later brought in to show me. I had to stay in recovery for a few hours. I had to pass the placenta, which would be sent off to pathology. I tried to get up but was dizzy from the blood loss. Mackenzie was transferred up to the NICU and Matt went with him. Andrea gave me a sponge bath and filled out Mackenzie's proof of birth forms.
When I was eventually wheeled up to the NICU in a wheelchair, because I was still dizzy.
I was pushed into the room and there was my tiny baby: 1.1kg. The nurses held out his hand and I touched him with my finger.
I was so sad. He looked so small and frail. I could not hold him because he was hooked up to several machines. I was wheeled back up to my room to rest, and we did have a few hours rest. The next morning a team of nurses, a neonatologist, a paediatric surgeon and a bereavement lady came to our door. They explained how unwell Mackenzie was and that unfortunately due to his prematurity, the machines were keeping him alive.
He was too frail for the surgery, but he wouldn't survive without it. They knew he was going to die, but I just couldn't accept it yet.
Matt wheeled me to the NICU in a wheelchair and into the high care nursery. We washed our hands and I saw our little baby, hooked up to a ventilator, with a highway of tubes going into his umbilical cord and sensors on his hands and feet. The machines were loud. The giraffe crib was so hot inside. I would touch his little hand. He did not like to be stroked. All I wanted to do was pick him up and hold him tight, but I couldn't.
Over the next 48 hours his condition went up and down. He barely moved. He was sedated and he didn't make a sound. He would occasionally wiggle his tiny toes. He had deep blue eyes and a button nose. He could barely open his eyes. We read to him, sang to him, took photos and videos of him, talked to him. I cried a lot. He had tests for this and that, the results were never good. Our baby was so unwell, so little.
By the Sunday afternoon we were called to a meeting with a neonatologist. It was explained to us that Mackenzie had no quality of life.
They said they could keep him alive, but he would need to be on life support for ever. We had to make the soul crushing, unnatural, horrific decision that we would turn off his life support the next day.
They said that if we had family who wanted to meet him, it was time to call them to come and say hello... and goodbye. We met with the bereavement workers Sheree and Emma. They helped us plan some things, and they gave us examples of how to make some memories. We were given a precious memory box. There were cuddle hearts - I wore one and we sat one with Mackenzie, so he could smell me and I could have him with me. We took his foot and fingerprints. Family came to meet him, under such awful circumstances.
We knew the next day would be the last day, but it was also the day we would get to hold him for the first time.
We got to change his nappy. Whenever he was handled his blood pressure would drop and alarms would go off. It was horrible to listen to. We organised to have a naming ceremony. We went and got changed. We came down, gathered the family, had a naming ceremony and sang his song, "You'll be in My Heart".
They got him out of the crib and laid him on my chest. He was so, so small. His body vibrated from the ventilator. I was horrified that he was being kept alive by this machine that shook his small body so much. He was hooked up to a hand puff ventilator that was manually operated by the nurses.
We were wheeled into a private room. We got to spend some time with him. We eventually asked them to take away all of the breathing cords and leave us alone. Matt held him, and it was in his arms that he took his final breath.
The hospital allowed us to have more time with him. We went up to our room and they brought him back in a cuddle cot. It has an ice base to stop babies from deteriorating. We had a nap with him, we dressed him, but all the clothes were still too big.
The next morning he was so cold. We wrapped him up and took him outside to see the sunrise. Then we called the nurses to come and get him. That was the last time we saw him. He was later sent for an autopsy. Which after a few months confirmed CCAM as the cause of death.
Leaving the hospital without our baby was traumatic. Seeing other people leave with their babies was so, so cruel.
We learnt the hard way that many people don't know how to support bereaved parents. It felt like everyone around us was either pregnant or had a baby of their own. We just could not have anything to do with them. It was cruel and painful. I felt judged for feeling like this, I was even told I was mean.
Social media was terrible. My feed was full of babies. I still got several prenatal appointment reminders, even though my baby had died.
Our loss brought Matt and I closer together though. We got through the most difficult time of our lives with each other. If it wasn't for him, I couldn't have got through it. He was my rock. Loss also changed a lot of relationships with friends and family. Some people were very supportive, others were disappointingly not very supportive.
What I wish I had known before I experienced baby loss is that after 12 weeks, things can still go wrong. That it can happen to anyone. That the people around you may not know how to handle your loss. And that some people will want to help by doing things for you, so write a list of things you need help with and direct them to that list.
To parents who are recently bereaved I would say that it will get easier with time. This doesn't mean that you're over it, just that the weight gets "lighter". You will never forget your baby, even if others do. Get something tangible to remind yourself of them that you can hold and touch. We have a custom weight teddy bear that we like to hold, cuddle and take with us on our travels. Also, you are not alone. There are many groups online to share your story with and ask for advice.
Our Possum Portrait means I can look up at Mackenzie just before I go to sleep. Talk to him and see his face, so that I never forget it. It helps me think he's looking over us. It's a lovely thing to be reminded of the kindness of others.
Loss has made me realise how cruel and unfair life can be. It's made me realise that many people don't know what to do or say to the bereaved. It's made me realise how precious life can be and that tomorrow isn't guaranteed. It's also made me realise that nothing is as hard as losing a baby.
I hope that in future, fewer babies die. I hope we can help people through grief better and not think it's ok to say insensitive things.
Thank you Possum Portraits for our beautiful drawing of Mackenzie.
Please consider donating and help give a
Possum Portrait to a mum like Abby
who is living with loss.
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