How an early palliative care referral could have changed things

This blog by Mauriche van der Merwe is written with raw honesty and describes the tenuous and precious life of her daughter, Lirie, and their experience through her unnecessarily traumatic end of life. Please be aware that it will and should be upsetting to all readers, but it is a story that needs to be told. Mauriche wants Lirie’s story to be a strong motivation for healthcare professionals to understand the supportive role of palliative care from the time of a relevant diagnosis, and to refer accordingly. She also wants parents and carers to know the benefits and that they can ask for palliative care for their child at any time. 

As a mother, you start envisioning your child’s life and how it will be from the day they are born. Or that’s how it should be…

From the moment Lirie was born, I feared envisioning her death – but nothing could prepare me for the harsh reality of it.

Lirie was premature, born at 32 weeks due to complications. She was ventilated in the NICU so her lungs could develop but was otherwise “normal”. This was until she suffered from an unknown injury in the NICU at 4 weeks old. My perfect baby’s life – as well as ours – was taken away from us by someone else’s actions. The injury left her paralysed from the chest down, her diaphragm included.

She first came home aged 7 months, on a home ventilator, 24-hour oxygen, a feeding tube and a cough assist device to keep her lungs from collapsing as they liked to do. So, I did what any mother in my position would have done, I halted my life, dedicated myself to learning how to care for this special baby and how to do some medical procedures at home safely, all while being a wife and a mother to our then 5-year-old son. I was suddenly in an unimaginable situation, with no-one to help me but my working husband. No-one ever talks about the weight of looking after a special needs baby that requires 24-hour care. Sleep became a distant memory I sometimes longed for.

No-one ever talks about the weight of looking after a special needs baby that requires 24-hour care. Sleep became a distant memory I sometimes longed for.

I had to learn to understand medical jargon to care for my child

We have only ever heard medical jargon from various doctors, some of which went completely over my head. So, I started studying everything medical related to understand what was happening and what was being said about my baby. Great, now I’m a nurse without the qualifications, but at least I could care for my child and make informed decisions. I was her primary caretaker after all, her life depended on me.

Her daily schedule of medication (of which there were 19 in total) and things that needed to be done to keep her alive, was extreme. Again, I say alive, as that was our primary focus. She never had a normal life; she never even left our house, except for hospital admissions. She had 22 ‘problems’ or ‘diagnoses’, ranging from multi-lobar lung collapse, COPD, paralysis, infarcts on the brain and scoliosis to epilepsy and 2 femur fractures. She endured more than 15 hospital visits during her short 2 years and 8 months of life. Despite this, my daughter was the happiest baby ever. She was extremely intellectual and way too smart for her size. Her strong will, silly streak and amazing personality shone through daily. Until it didn’t…

My happy, bubbly, silly baby slowly turned into a child I no longer recognised. She lost her spark, and no matter how much we tried getting it back for her, she was done. She was deteriorating progressively and noticeably, both emotionally and physically.

I contacted Dr S, a specialist whose care she was under.

During the last few hospital admissions, we’d had to physically restrain Lirie in order to do anything. Imagine forcing your 2-year-old baby down on a bed so the doctor can listen to her lungs or find a vein to draw blood from that has not burst from all the pricking in the past. During these visits Lirie kept shaking her head, crying, and saying “NEE! KLAAR!” (NO! FINISHED!) but we did not stop. We held her down until she had no more strength left to fight back.

Palliative care had never been mentioned to us

The doctor wanted to add SSRI’s, steroids and more to Lirie’s medication list. This troubled us, and I started doing research. And that’s when I came across palliative care. Since this had never even been mentioned to us, it was something I had to delve into myself. I asked Dr S about it, and the response was, “We need to admit Lirie to CTICU (Cardiothoracic Intensive Care Unit) for at least a week to evaluate her and decide if she is a palliative care candidate”. That sentence shook me to my core. Lirie had never spent 5 seconds without us, how on earth would she cope for a week in hospital, ALONE?

That was what was supposed to happen, but Lirie had other plans…

A week after we decided to start the process of palliative care (while still going forward with the planning of the ICU admission), Lirie started getting sick. She spiked a fever on Saturday the 9th of December 2023. I immediately knew this was pneumonia, due to her having had ventilator associated pneumonia a few times in the past, and the early warning signs were there. We’d struggled with her secretions for about 2 weeks prior to this, and no matter how many times I contacted the doctor, we had to wait for the ‘admission’ before anything could be done. All the while, Lirie was not sleeping, constantly feverish – no matter how much Panado and Empaped I gave her – pale, and in so much pain.

Words that have the power to break you

On Monday the 11th of December we rushed her to the emergency room after suctioning pure blood out of her lungs. The x-rays confirmed bronchial pneumonia and we decided not to administer antibiotics as we did not want her admitted or traumatised any further. I kept thinking that there had to be something we can do, we had to be able to ease her discomfort. I asked the doctor what could be done, and the answer I got will haunt me forever. I was informed that since we didn’t want to administer antibiotics intravenously, they couldn’t do anything. They would not adjust the ventilator setting to assure comfort, and we must use Panado for Lirie’s pain. Since we had made the decision to let our baby die, we must manage it at home and ‘do our best’. Uhm, excuse me? I have only ever done my best! As a special needs parent, those few words have the power to break you. So, we took our baby home, knowing what was to come.

I knew my baby would not make it to Christmas.

As the saying goes: ‘Mother knows best’, and I knew my baby would not make it to Christmas. I finally got hold of a paediatric palliative care doctor’s number. Let’s call her Dr L.

I expected the worst

After contacting Dr L for the first time, she agreed to do a home visit, as it was obvious that Lirie would not make it to the ‘admission’. I remember feeling so anxious, because I was going over her doctor’s advice and not following the necessary procedures. How much trouble would I be in, I wondered. How mad would Dr L be for seeing us without a referral? I mean, my daughter probably wasn’t even a palliative care candidate, so what had I just done?

Dr L came to see us on Tuesday the 12th of December at 14:00. I expected the worst. I waited for her to tell me how I should have done more and that I failed as a mother. Instead, she turned my world upside down. I still remember the first question she asked me: ‘How are you coping?’ What? How am I coping? “Uhhm, okay I guess,” was my answer. Why would she be interested in my wellbeing? It was only later that I learned that my wellbeing was just as important as Lirie’s.

Dr L sat down with us around Lirie’s bed while Lirie was ignoring her and watching Cocomelon on her phone, because if she didn’t give this person attention, this person would ignore her. I kept trying to get Lirie calm enough for Dr L to examine her, but she informed me that she wouldn’t be troubling Lirie, and she could see enough without touching her or making her anxious.

We were making decisions for our daughter for the first time in her life

She discussed everything with us, from Lirie’s anxiety, her general wellbeing, our routine with her, our feelings, and expectations, what we want to happen and eventually, Lirie’s death. We felt so included, we were making the decisions for our daughter for the first time in her life, and it felt great. We had an advance care plan, we had anxiety medication, we had morphine for her pain and discomfort, we had everything we needed. Dr L even arranged with Reach for a Dream to bring a Petting Zoo to our house the next day. Lirie could see animals for the first time. Our prayers were answered, until 22:00 that night.

Eight hours after meeting with Dr L for the first time, our daughter started actively dying. It started with a swollen belly, her kidneys and bowels stopped functioning and her fever was 42 degrees. Two hours after administering morphine for the first time I contacted Dr L at midnight on Tuesday, asking for advice as we did not know what was happening or why our daughter was still in pain and crying non-stop. She confirmed our worst fear was turning into reality. Lirie’s body had started giving in. And so, our nightmare started.

The last suctioning we did resulted in a big chunk of her lung coming out from deterioration, showing us that she was a lot sicker than we had thought. After that, her throat closed and nothing came out anymore, except this barking cry that I still hear when I close my eyes.

My almost three-year-old knew she was dying

Our daughter was inconsolable, in and out of consciousness and going through the most traumatic death you can think of. It took her body 13 hours to shut down completely, and for her to be at peace. Through this entire experience Dr L stayed in touch with me, asking what was happening and offering options of things to do to try to ease her death. But nothing helped or soothed her. While in her brief conscious moments Lirie kept holding onto me, looking at me and saying, “Bye”. My almost three-year-old knew she was dying.

My strong façade shattered

She took her last gasping breath in my arms at 10:18 am on Wednesday the 13th of December, and with that the strong façade I’d had to keep up, shattered. I remember cradling my child’s lifeless body in my lap, thinking “why?”. Why was she denied a peaceful life and death? Why was her death so traumatic and excruciating for her and us? Why did I receive more support in the last 21 hours from a doctor I’d just met than I did in 2 years and 8 months from doctors I knew?

From the onset of fever, it took 5 days for Lirie to die, showing there was a lot more going on in her little body than we thought or believed. Proving she would have benefited from palliative care so much more if her primary doctors listened to us and started her on it when we requested, and even speaking to us about it when she was first diagnosed. Her doctors were great at keeping her alive, but not at providing us with all the relevant information or assisting us and listening to our wishes.

With an earlier referral to palliative care, it could have ended very differently, for her and for us.

My daughter’s death was unnecessarily traumatic and excruciating because we had not been informed of all the options available to us. With an earlier referral to palliative care, it could have ended very differently, for her and for us.

Lirie’s death changed me forever, it gave me a heart attack and broken heart syndrome. It left my house empty, my brain tired, my soul depleted, and my family devastated. No-one will ever be prepared for the death of their child, but we were supposed to have more time to prepare. Everything happened too fast and was too brutal.

Palliative care is never just about end of life

I remember about a week after Lirie’s death, a doctor commented that the decision to start palliative care was ‘not ours to make’, and how we had made a grave mistake. It is for this reason, that Lirie’s life and death will not be a cautionary tale, but a motivation to help other families in a similar situation receive the support and care they need.

Lirie’s life and death will not be a cautionary tale, but a motivation to help other families in a similar situation receive the support and care they need.

Palliative care is never just about end of life, but always about comfort for the whole family. Doctors should stop treating it like a dirty little secret, but rather use it to give a family all the tools they need to give their child the best life, and ultimately death, that they can.

A person is never truly dead if their loved ones still talk about them and take time to remember them.

Lirie will be immortal…

About the author

I am a mother, a wife and a daughter. A bereaved mother, a trying mother, a mother doing her best for her “forgotten child” who got left behind after his siter died. I am ever-trying. If I had to describe myself before the death of my daughter it would have been easy, but now, not so much. All I can say, is that I am a woman doing her best to navigate an uncharted world, all while being adamant to make a difference in the palliative care community. I am venturing into something most people don’t know about, so I can hopefully help other families who are in the same situation I was. My creativity, my loss, my heartbreak and my love will make a difference in this new world.