SOULS TO BE LOVED: MICHELLE’S STORY

A friendly dog in Cape Town's Keurboom Park receives a loving touch from Michelle Meiring. This energetic doctor is the founder of Paedspal, a non-profit organisation that's the largest provider of paediatric palliative care in South Africa. 'People tend to think that palliative care is just about dying, but it's more about positively impacting quality of life,' she says | Photo: Leentjie du Preez 

Michelle (53) grew up in Pretoria and attended Pretoria Girls High School, then the universities of Pretoria and Witwatersrand (Wits). She lives in Cape Town with her two children, Kerry (20) and Matthew (15)

WHY CHILDREN’S MEDICINE? After qualifying as doctors, my then-husband Owen and I wanted to get experience in every field of medicine so that we could work as generalists in rural South Africa. I started off in children’s medicine, known as paediatrics, but it awoke in me a compassion for innocent, suffering children. I fell in love with it and never moved on to another discipline!

I began specialist studies in paediatrics at Wits, working at Baragwanath Hospital in Soweto from 1998. It was the height of the HIV/AIDS pandemic and we had no medicine to combat the illness. We saw up to 50 babies a day and it was normal for three to five to die on your shift. It was soul-destroying.

DEFINING MOMENT? As doctors, we don't like having high death stats on our slates. So I played a silly game, which was to try and keep patients alive until my shift finished even though I knew that, whatever I did, they wouldn’t actually survive. A four-month-old baby changed me forever. I stayed up all night with her, trying to keep her alive, but she passed away one hour before my shift handover. I had to break the news to her mother who’d been so hopeful, watching me do everything in my power to keep her cherished child alive.

This mother’s grief was monumental and as I sat with her I realised how desensitised I had become, so early on in my career. I was seeing children as problems to be solved, not souls to be loved. It was the most formative experience of my life. I knew something was missing in the whole process.

the importance of engaging children

WHAT HAPPENED NEXT? I went to the hospice at Wits to learn how the staff worked with terminally ill patients, only to discover that they didn’t really look after children. So we created a paediatric ward in the adult hospice and helped train caregivers, doctors, nurses and social workers regarding holistic care of the child's body, mind and spirit, and the need to support families more. We stressed the importance of engaging children more, talking to them about their illness and – where appropriate – even about dying.

Ever since, I’ve been working in the non-profit space trying to help children with life-limiting conditions to live as well as possible for as long as possible. And then, when the time is right, to support a ‘good death’. People tend to think that palliative care is just about dying, but it’s more about positively impacting quality of life.

We moved as a family to Cape Town in 2009. UCT [The University of Cape Town] is the only university in South Africa offering postgraduate training in palliative care, so it felt like a natural next step. I held a part-time academic post there at the same time as working for the Hospice and Palliative Care Association of South Africa (HPCA) and expanding NGO (non-governmental organisation) work into the city.

'I realised I was seeing children as problems to be solved, not souls to be loved,' says Michelle. She started encouraging children with life-limiting conditions to express their feelings, and trained medical and support staff to engage more with children and support their families | Photo: Leentjie du Preez

HOW DID PAEDSPAL COME ABOUT? In 2013, I was invited to speak about children’s palliative care at a medical conference at the Vineyard Hotel. After I spoke, a doctor from Johannesburg said he knew an anonymous donor in Cape Town who might fund a palliative care NGO for children. By extraordinary coincidence, not long afterwards, the same anonymous donor ended up in a recovery room with one of our social workers who told him about our work and vision. Following that conversation, the donor was ready to fund us. To me this is nothing less than God orchestrating things! I mean, what are the chances of that happening?

We officially opened Paedspal's doors in 2016. Located opposite Red Cross War Memorial Children's Hospital, it’s ideally placed to be a calm space across the road. We aim to care for the entire family early in the disease process, not only when the disease becomes less manageable and the family is in crisis. We provide multi-disciplinary care so that the child and their family are supported and adequately prepared for the journey ahead.

Paedspal, which Michelle established in 2016, provides a calm space across the road from Cape Town's Red Cross War Memorial Children's Hospital. 'We aim to care for the entire family early in the disease process and provide multi-disciplinary care,' she says | Photos: Leentjie du Preez and Paedspal

YOUR VISION? To support children and families going through the toughest season of their lives, and to help them come through the other side. This happens by engaging with children directly and providing holistic support to them as well as to their family, including siblings. We provide medical and psycho-social support as well as therapies such as art, music and aromatherapy. We focus on more complex cases and see children in hospitals, in our out-patient clinic and in various local institutions. We see some in their own homes too. In addition, we support medical staff and are involved with training across the Western Cape.

‘We have a fantastic team at Paedspal who invest their hearts and lives into our mission to help children and families,’ says Michelle | Photo: Ronelle de Villiers

PRINCIPLES FOR COMMUNICATING WITH PARENTS AND THEIR SICK CHILDREN? Kids are smart and know when something is amiss. They deserve and need honest communication, even when they’re dying. If you listen closely, you often realise children have figured a lot out already and are waiting for opportunities to discuss things with their loved ones.

These are scary conversations to have with children and prep needs to be done with parents and adult carers. Letting children guide the process and asking more questions in response to their questions is a good technique for discovering what information they’re after, and where they already are in their understanding of their condition. Even children who are non-verbal or have limited capacity to express themselves have a desire to communicate. This is where our art and music therapists play an invaluable role in helping them to express themselves and be heard.

stuck

I find it sad when important conversations don’t happen because families are stuck in what we call ‘mutual pretence’. This is when everyone knows what’s happening but is too scared to say anything because they want to protect their loved one. If children die at this stage it can leave parents with many regrets in their bereavement journey, knowing that they didn’t get to say what they wanted to say. It’s really difficult with children sometimes to know what the outcome may be, and we do live in hope that things may turn out differently, but if they don't the boat is missed.

ANY MIRACLES? I believe that through this work, God has shown me a different perspective on life and miracles. While I’ve seen a few miraculous healings in my career, I think there are many more things that happen that we don’t acknowledge as miracles. We tend to limit miracles to physical healing and a long life but they can happen in other domains of the human experience. When a person dies peacefully after broken relationships have been healed, that’s miraculous and beautiful. I’ve seen feuding families come together around the deathbed of a child, and it’s wonderful to witness.

There's a saying in palliative care that goes: ‘You may not die cured, but you can still die healed’. It refers to the ‘work of dying’, which is getting your affairs in order and making peace with those who you need to make peace with. This work is not just for adults.

'While I’ve seen a few miraculous healings in my career, I think there are many more things that happen that we don’t acknowledge as miracles,' says Michelle | Photos: Paedspal

CHALLENGES? Alongside ongoing hands-on care, Paedspal juggles the challenge of finding funding and running an organisation. I personally find it a juggle to be the mom of young adults while training the next generation of professionals through UCT and running Paedspal. And I’m now also working towards an audacious goal to help more families, train more professionals and start much-needed research in this field. We want to start a palliative care centre of excellence in association with the Rohan Bloom Foundation, named after a teenager who passed away from an aggressive cancer. Rohan’s father, Rod, wants to ensure that no child or family in Cape Town will face a similar journey unsupported.

Our dream is to create a centre that will include our Paedspal clinic, in-house children’s hospice, training and research all in one place. It’s a huge challenge but the work and its impact would potentially extend across the African continent. I hope that more funders, individuals and organisations will understand the need for palliative care for children and their families, and direct resources towards it.

'Our dream is to create a centre that will include our Paedspal clinic, in-house children’s hospice training and research all in one place,' says Michelle

YOUR ADVICE TO SOMEONE SUPPORTING A FAMILY WITH A TERMINALLY ILL CHILD? I think we often shy away from families with a loved one who’s not doing well because we don’t know what to say. Be your authentic self, just as you were before their child got sick, but obviously also be sensitive to their changing needs and the burden they’re bearing. It’s ok to not say anything or even to say ‘I have no words’, but don’t run away when you spot them in the shops. Families notice this and can end up feeling isolated. They crave normal conversations.

Ask how you can help, don’t assume. Sometimes families want to be polite and accept assistance that they actually don’t need because it’s well-intentioned, but it adds to their discomfort. If their child dies, don’t stop talking about them or using their name. This helps to keep their memory alive and reassures their family that the child isn’t forgotten.

'Don't run away when you spot a family of a terminally ill child in the shops. If their child dies, don't stop talking about them. This helps to keep their memory alive,' says Michelle | Photos: Paedspal

WHAT MOTIVATES YOU? I was about seven or eight when I first understood the message of the gospel. I still have a vivid memory of a Sunday School teacher who, using a fuzzy-felt bear on a green fabric storyboard, shared the story of Jesus and what he’d come to do for the world. She asked if any of us children wanted to respond to his call to follow him. It was life-changing for me and led to the path I’m still walking.

My career has been filled with moments of intense emotional and professional growth. Many of my experiences have been filled with trauma and grief, but all have provided profound insights into the human condition and the necessity of compassionate care. I believe God gifted me with a heart to spot some of the most vulnerable people in our systems, plus the capacity and skills to galvanise teams to do something about it. I see the ways He works to bring peace, flourishing and compassion as miraculous signs of light and grace in the darkness. I’m so grateful for what He has done in the spaces He’s put me in.

'I see the ways God works to bring peace, flourishing and compassion as miraculous signs of light and grace in the darkness,' says Michelle. 'I’m so grateful for what He has done in the spaces He’s put me in.' | Photo: Leentjie du Preez

Food for thought on a Paedspal patient's creation | Photo: Leentjie du Preez