From time to time ICPCN will publish a blog either from an expert within the field of palliative care for children or from a member who has something worthwhile to share with other like-minded people.
Here are some of our most recent blog posts:
Focusing on the small wins by Sophie Kieffer
Focus on the small wins, I tell myself. The sleeping baby hugging the teddy bear you brought him. One patient pushing another in a wheelchair through the corridors. A nurse warmly greeting you with a hug at the door. Sneaking extra sweets into a patient’s hands. These are the moments that can be easily forgotten amidst the overarching sadness of a paediatric hospital ward with the smells, the cries, and the hollowed eyes.
I’m often asked how I can handle working in such an intense environment. “Wine and cheese” is my usual response! But it is really the focus on the small moments that keep me going. They have to be enough for now.
Especially for mornings like today. This was my first time visiting the burn ward at a large hospital in Kenya. As I entered the room, I was overcome by the piercing sounds of crying children. From my babysitting days, I am used to two-year-old tantrums and playground mishaps. Here, however, sheer physical pain is the driving force behind the guttural cries.
The story of Baby S and the power that comes with decision making
by Tracey brand
In this latest ICPCN Blog, Tracey Brand, co-founder and Director of Umduduzi, Hospice Care for Children based in the province of KwaZulu Natal in South Africa, shares the story of Baby S. His story highlights the difficulties and challenges of providing good medical care when access to resources are limited, the need for better communication and the role that a children’s palliative care service can play in giving family members the power to make the most difficult decisions.
Baby S was born with Trisomy 21 (Down Syndrome) in January 2019. As with many babies with Trisomy 21, he had a severe cardiac problem. After assessment by the paediatric cardiologists it was determined that surgery would not be an option at that time as his lungs were weak and his weight was low. The cardiologists wanted to reassess. Given the burden on our health care system and the fact that there is only one place within the province to receive paediatric cardiac surgery for state patients, surgery was booked for 2020.
The missing middle – being a teen with cancer in South Africa
by Cara Noble
Cara Noble is the National Relationship Manager for Service Delivery Programmes at the Cancer Association of South Africa (CANSA). where she has worked since 2011 as a social worker with children and families affected by cancer. She is passionate about helping families cope, adapt and heal through their journey of cancer.
In this latest ICPCN blog which honours the Childhood Cancer Awareness month of September, Cara writes of the difficulties faced by teenagers with cancer in her country. A problem which is replicated in many other sub-Saharan African countries. Depending on the policy of various hospitals or paediatric oncologists, young South African teenagers are very often shunted off to the adult oncology wards and expected to behave and respond as adults.
In her blog, Cara calls these young people the ‘missing middle’ and calls upon health services providing treatment for this overlooked group to provide a suitable physical environment for them and to ensure they receive the age-appropriate social and emotional support for the challenges they face.
Read her blog here
The price of ignorance – A blog about the need for training in perinatal palliative care
by Busi Nkosi
I still think about Millicent. In 1982 I completed my midwifery training and early in 1983 I was working in a South African clinic’s midwifery department as a qualified midwife. We used to rotate in all the three units i.e. ante-natal care, labour ward and post-natal care. One had an opportunity of following her patient right from ante-natal, through the labour ward to post-natal care, which was fantastic.
Our ante-natal clinic was very exciting. The sessions started with a health talk, followed by singing and dancing as a way of exercise, then individual physical examinations of pregnant ladies in the different cubicles by midwives.
Mother’s Day Mourning – A blog on how to support grieving mothers on Mother’s Day
by Lanise Shortell
Grieving mothers experience sorrow on a bone deep level. Any attempt to emotionally empathise can stop your breath. Mothers that have buried a child often quietly disengage from communities, families, and friends during waves of grief, especially around Mother’s Day.
We intend to be compassionate by offering cliché support, giving hugs, and encouraging the focus to be on the positive, on living children, and moving forward. Unfortunately, we simply do not know how to support moms in grief. Our attempts in caring for this unique population leave grieving mothers feeling misunderstood and distressingly isolated.
So, what can we do?
Follow the Child – A blog on anticipatory grief
by Sacha Langton-Gilks
I wish someone had explained to me that grief starts the instant your child is diagnosed with an incurable and life-shortening condition. You grieve for the life your child, and by extension the whole family, was supposed to have; it’s called anticipatory grief to distinguish it from grief after the death. The word ‘grief’ comes from an Old French verb meaning to burden, afflict, oppress and which in turn stems from a latin verb – to make heavy. Having experienced its sheer weight of pressure in my chest and stomach, I find this etymology fascinating. No one told me about this type of grief and therefore I accused myself of being borderline pathetic that I couldn’t keep a grip when our eldest child was in the last months of his life in the summer of 2012; it is so very hard to dismiss the mirage of their graduation, wedding, christenings and parties.
Have you ever wondered what ‘Art Therapy’ at a children’s hospice would look like? Judy King, an Art Therapist who works part time at Bear Cottage in Manly, Australia has provided us with a step-by-step, illustrated account of the creation of a stunning ‘Tree of Resilience’ – a fine example of inclusivity and creativity in practice. Judy has been an artist for many years and also works as a registered nurse, on a casual basis. She combined these two worlds by completing the Masters in Art Therapy at Western Sydney University in 2008 and has been working with a variety of different client groups since then.
She says that working part time at Bear Cottage she is able to facilitate children and their families to express themselves within a safe space, making memories creatively together or individually as part of their understanding and processing of what has connected them to the hospice.
Addressing grief and fostering resilience in children
by Lanise Shortell
Lanise Shortell serves her local community as a perinatal and pediatric hospice nurse in Atlanta and facilitates family centered grief groups biannually at Camp STARS, a family bereavement camp outside of Atlanta. In this blog she reminds us that children need to be given the tools, the time and the space to express their grief and provides helpful tips and advice on how we can grow resilience in children who have suffered a loss.
She writes: We often comfort ourselves with the belief that grieving children are resilient. Various experts attempt to calm parents in turbulent times by defaulting to the resilience of childhood. When a child experiences a significant loss, relying solely on resilience obstructs growing through grief. Simply relying on children to possess internal coping mechanisms to process significant loss increases the likelihood that emotional health will be adversely affected. Resilience is not a tool we instinctively possess or inherit. Childhood resilience is a tool that is purposely crafted, fostered, and nurtured.
Sabrina McKeithan has been a registered nurse for over 40 years, the past fifteen and a half years in the field of hospice, which is where her passion lies. She says, “Hospice nursing is challenging, which enables a nurse to think outside the box. There is nothing more humbling than assisting a patient to reach their goals of dying how they choose to do.” In this blog, she writes of a very meaningful experience of providing hospice care for a very little patient and her family.
As a hospice nurse, we care for all ages, colour and creed. Do not run in reverse when that phone call comes and you find out that you will be caring for a teeny, tiny baby.
You may become overwhelmed with fear, worry- ‘I cannot do this’ or I ‘don’t do babies’ etc. None of us choose what happens in our lives but this is what we do, isn’t it?
Instead, use those resources that surround you so you can prepare yourself for the task ahead; be comfortable and strong in your knowledge and the confidence as a hospice nurse to simply do the best you can.
Sophie Kieffer is a passionate advocate for paediatric palliative care who has spent time visiting different successful paediatric palliative care programmes in Eastern and Southern Africa. She has also volunteered in similar work in South America, Nepal, and Israel. In a blog written exclusively for ICPCN she describes her visit to Mohamed Bzeek, a man who has made it his life’s mission to care for the most vulnerable members of society – he fosters children who are terminally ill, providing them with first class care and, more importantly, unconditional love.
Sophie describes the visit, from the warm welcome she received from Mohamed, her encounter with his biological son who lives with Brittle Bone disease and the privilege of holding a small, fragile girl he is presently fostering who is severely brain damaged and prone to seizures.
To all readers, I’m Huyaam Samuels, 18 years of age. I suffer from a rare condition called Pseudoachondroplasia and Hypermobility Syndrome, all of which causes chronic pain; my main enemy. This is how I met Dr Meiring and her Palliative Care Team at Paedspal, which lately has been growing with the addition of many great people.
I suffered mainly from severe pain throughout my body, muscle spasms and backache. Many doctors could not help me and did not take me seriously. Being with this Palliative Care Team and Dr Meiring is something which I hold close to my heart because it gave me hope when I believed there was none.
Why I work in paediatric palliative care
by Sophie Keiffer
The tagline on many non-profit organization’s materials is “Save a child’s life”. This is admirable and makes us all feel good to think we could contribute to saving someone’s life. When the tagline of an organisation says “This child is going to die too soon, help them live well and die more comfortably and peacefully” somehow, it doesn’t have the same ring. And doesn’t get the same response.
Wear a hat to make a difference
by Lucy Watts MBE
On Friday 14th October 2016, ICPCN is holding an event called Hats on for Children’s Palliative Care (Hats on 4 CPC). People are being asked to wear a funky, fun or smart hats to work and buy a sticker to raise awareness of the 21 million children globally who are diagnosed with an incurable or life-threatening condition and who need palliative care. Sadly, few of these 21 million children have access to this care, and this needs to change.
by Tina B
Every child, adolescent and young adult wants to be “normal”. Every kid wants to be picked for a team, or take part in a race. You don’t necessarily want to win, coming midfield would be fine, but you really don’t want to come in last! I used to come last, every time. It’s difficult to be “normal” when you have a chronic illness or terminal disease. I didn’t want to be seen as the “sick girl” or even the girl with the “blue lips”. I loathed the way people used to look at me; eyes full of pity. I didn’t want their pity; I wanted them to see me as “normal”, as an equal.
One unforgettable day
by Lucy Watts
In this blog post, Lucy Watts, ICPCN’s first Global Youth Ambassador, describes the truly amazing experience of being invested at Buckingham Palace as a Member of the Most Excellent Order of the British Empire (MBE) for her services to Young People with Disabilities. Her MBE was presented to her by His Royal Highness, The Prince of Wales.
Supporting young people through grief
by Melanie Rolf
A no-longer-so-little girl I know died today. It was anticipated, but no less sad because of it. When I worked with her most her favourite things were painting nails and pulling pranks. I don’t know if it’s a professional defence mechanism, something that comes with age, or an inevitable evolution of my beliefs, but I no longer struggle with the unfairness of it.
At the moment my attention turns to supporting the people left behind, her friends, who are similarly too young to be dealing with this, but are left no option.
Living life as a gift
by Janet Legemaate
I am often asked “how do you cope?” I realised when thinking about this question that there are so many reasons for how we do cope with the situation we find ourselves in. I am also so aware that no matter how hard a situation is for our family that there is always someone who is experiencing something harder. I also often look back over the last 18 years and think that we as a family know no different, this is our experience.
What has become apparent is that our journey has cycles where we go through so many emotions and have to deal with them to be able to carry on.
Shooting the second arrow
by Melanie Rolfe
Many years ago I had a miscarriage, and recently a doctor asked about my experience. Speaking about the baby I lost was emotional for me, more so than I had expected. What was even less expected was my doctor’s reply – Why does this still upset you?
Why does this still upset me?
Because it is still a child that isn’t here. Because it was the most devastating thing I’ve experienced. Because now I have a beautiful son I can hold in my arms and I know what I missed. Would you ask why a patient with a broken bone is in pain? I’m in pain because it’s painful. And I’m ok with that.
Season of Gratitude
by Lanise Shortell
As 2015 begins to dissolve into distant memories, we are afforded opportunities of reﬂection for the people and experiences we hold closest to our hearts.
Paediatric Hospice and Palliative Care is not a service one would expect to be on a gratitude list. Initially, the care we offer to families is received with anxiety, thoughts of extinguished hopes, and a myriad of tangled emotions. Our team members acknowledge that we are the last people that parents wish to meet. However, there are families that become advocates for paediatric hospice after experiencing the value it adds to life.
A tryst with Thursday
by Smriti Rama
What can I tell you about the Thursday Clinic that would adequately sum up the essence of what we witness and experience? Most people’s first reaction to the idea of a clinic for children with life-limiting and life-threatening illness is to recoil – either with the imagined pain, horror, denial and sadness that accompany such an idea, or with the belief that this is the realm of only certain “types” of people, who are “brave”, “courageous” and whatever other associated synonyms you can conjure.
The simple truth, though, is that the people who work at this clinic are not flapping around with halos or wings attached to them. These are everyday folk and by that token, feel everything from intense joy at small victories that are witnessed, to the darkest of despair at the helplessness in some situations.
What makes this space extraordinary, as you can guess, are the children.
Kicking the bucket list
by Melanie Rolfe
The bucket list – brought to popular attention by the 2007 Jack Nicholson movie of the same name – is a lovely idea. A checklist which neatly contains all the to-dos that will make your life complete, so that when the time comes to ‘kick the bucket’, you won’t look back with regret.
Go bungee jumping? Check.
Climb Mount Everest? Check.
Run a marathon? Check.
In case you were wondering, I’m checking these off an internet list of most popular bucket list items. I kid you not, there are websites – and now even expos – devoted to getting ideas for your bucket list; you know, because who else but a pool of anonymous strangers could know what experiences are meaningful to you? And obviously these activities mean so much to you, that they plumb slipped your mind.
There is nothing about hope that is false
by Lanise Shortell
As paediatric care providers, we are extremely cautious not to provide a family with false hope. ‘It seems unfair’, we say. ‘We don’t want to set families up for disappointment’, we rationalise. For some reason, we find that talking to families about the very worst components of a disease process is responsible medical practice. We find ourselves using the terms false hope, most commonly, at the initial diagnosis of a life-limiting illness. We reason that we simply want to prepare families for reality. Read more
For the Experts
by Melanie Rolfe
I would like to let you know from the beginning that whilst I know with my whole being the intensity of love that a parent feels for their child, I do not know what it’s like to hold the knowledge that you will outlive them. I have worked around death, specifically that of children, for almost a decade. I suspect that depending on where you’re coming from, that sentence may fill you with different emotions. Read more
by Rabecca Thurecht
Your baby will be born with a very large hole in her back. Her spine will be exposed to the outside world. There is fluid crushing her brain and she has a condition that causes pressure to crush the brain stem. Until she has her first major surgery, her condition will be critical and the chances of her passing away in the first few days of life from an extensive infection are very high. She will have many surgeries throughout her life if she survives and her brain damage is likely to be severe.’
These words lingered in my head as I felt your tiny hand wrapped around my finger. Read more
Incompatible with Life
by Lanise Shortell
Incompatible with life. These three words have the power to bring life to a screeching halt for new parents. The terms incompatible with life can fast-forward a family of a seriously ill child into a future they can’t imagine. Hearing the words incompatible with life can quickly deplete hope, cause feelings of isolation, and lead a family to despair. Regrettably, these three words remain commonly used today.
Sharing your life with cancer
by Tamsyn Kiely
The day you get told your child has cancer is the most unnatural day of any parents life. The days that follow are surreal and just as unnatural as the day your baby got diagnosed. From that day forward, nothing is the same, your life and the life of your children is changed forever, because from that day forward…
You share your life with cancer…. A life partner you never expected to have, never would want and most certainly would never want in your child’s life. Read more
Grief in Cameroon Society
by Joshua Ngwang Mnang
Wikipedia defines grief as a multifaceted response to loss, particularly to the loss of someone or something that has died, to which a bond or affection was formed. Grieving that is not well managed can be as dangerous as a time bomb because of the severity of the impact of the trauma and the after effects from corking one’s emotions.
“The culture of the people is their mark of nobility’’. This is the motto of my community; a community that is strongly attached to beliefs that are quite unique and diverse – ranging from their beliefs about nature, illnesses, causes and effects, why man exists, why man is ill and why things happen. Why? Why? Why? Read more