Celebrating 22 years of Sunflower Children’s Hospice
On the occasion of their 22nd anniversary, Joan Marston, founder and professional nurse, reflects on the history and development of Sunflower Children’s Hospice in Bloemfontein.
What is a children’s hospice and what does it achieve? We have been asked that question many times over the past 22 years and the answer is complex, multi-faceted and seems to grow longer with each year.
Originally named St Nicholas Children’s Hospice it grew from the children’s hospice programme of Bloemfontein Hospice that began caring for children mainly with genetic and congenital conditions and cancer in 1991. The idea to establish an individual children’s hospice in 1998 was a response to the need to care for many young children dying of AIDS at a time when we had no access to antiretroviral treatment in South Africa. These children so often either had very ill parents or were orphaned as a result of the AIDS pandemic. Most came from the poorest communities and died before the age of four. Our focus at the time was on treating their symptoms, providing good nutrition, ensuring holistic care which included spiritual care and play, and helping them to enjoy their usually short childhood and lives in the best ways possible.
We realised we needed an in-patient unit
We soon realised that in order to reach as many of these vulnerable children as possible we would need an in-patient unit as well as Palliative Day Care centres. There was of course no funding for this so, together with our wonderful Hospice Medical Director, Dr Robert Book, we paid a visit to the then Head of Health in the Free State, Professor Househam. Being a paediatrician he agreed that the Department of Health should help us to obtain premises, and we were provided with an empty house within the grounds of the National Hospital in Bloemfontein. Soon afterwards, Sunflower House came into being.
Collaboration with the state was key to our success
Having Sunflower House within the grounds of National Hospital has been key to the development of our model of providing palliative care. The children are the beneficiaries of care from many departments of the hospital with easy referral to secondary and tertiary care when needed. Since 2002 medical care has been provided by our Medical Director, Prof Hanneke Brits, with help from other doctors from the Department of Family Medicine paediatric team.
In addition, medication for the children in Sunflower House is usually provided by the hospital pharmacy and the children benefit from receiving different therapies from hospital departments as well as from University of the Free State students of Nutrition, Occupational Therapy, Psychotherapy and Physiotherapy. Immunisations, dental care and eye care are also available for the children. Being on the grounds, acutely ill children are quickly and easily taken to the paediatric ward which runs a 24 hour clinic.
Community Day Care Centres enabled us to reach many more children
With funding from Save the Children UK our six Day Care Centres were developed which expanded the reach of children’s hospice care within Bloemfontein and into the communities surrounding Bloemfontein, in Botshabelo and in Smithfield, and were linked to an extensive community care programme. Later, Sunflower Children’s Hospice was also instrumental in the setting up of a children’s hospice programme for Ladybrand Hospice. Few people know that the very first funding for the training of Community Caregivers in the Free State in 1998 came from SA Breweries and the first training of Community Caregivers (CCGs) was provided by Bloemfontein/St Nicholas and Viljoenskroon Hospices; or that funding for the Free State Department of Health to employ CCGs and regional trainers around the province was raised by Bloemfontein/St Nicholas from Bristol-Myers-Squibb after St Nicholas participated in a national research project to develop a national curriculum for Community Caregivers.
In 2008 St Nicholas Children’s Hospice (now Sunflower Children’s Hospice) raised $2 million from USAID for a 2-year project which was named The St Nicholas Bana Pele Network. It’s objective was to develop children’s palliative care throughout the province and implemented it in partnership with the Free State Departments of Health and Social Development and the Hospice Palliative Care Association of South Africa.
Sunflower House acts as a ‘backup’ for children who can’t be cared for at home
After the introduction of ART, the need for hospice care for children with HIV reduced (although sadly it is still needed) and the hospice now cares for children with many different diagnoses. However, we still work in close collaboration with government institutions as well as other NGOs to help the children live their very best lives. Whenever possible children are kept at home, with the 15-bed/cot Sunflower House used as a “backup” when this is not possible. While Sunflower House is a very simple home from home, many of the children who have been admitted there “because they will die soon” manage to flourish and live far longer than expected. This is due to the excellent holistic care provided by the palliative care team of staff and volunteers, assisted by the hospital departments. These children often get to go back to their own homes where our care is continued by our Community Team. Over the years we have also provided vulnerable households with thousands of food parcels, helped obtain documentation and grants; fought to get children into schools and made sure they are kept warm in the winter with sufficient clothing and blankets.
When one of our children dies, their names are added to the Sunflower Wall of Remembrance on the outer walls of the hospice. This gives them comfort as they know they will never be forgotten.
We could not have done it alone – our network extends to all corners of the globe
Over the years, many volunteers from Bloemfontein and a number of countries from around the globe have spent time helping out at the hospice where they work and play with the children. They all bring their own unique talents and skills to our hospice and to the care of the children, and enjoy a wonderful time with us, making their own happy memories.
In the UK our long-standing friends from the Sunflower Children’s Hospice Trust UK have set up an awareness project called “Tall Flowers for Short Lives” encouraging people to plant sunflowers, with seeds from an original source, to both raise awareness and some funding. Flowers are now planted in every part of the UK and in some other countries as well.
For 20 years we have overseen training in Community Caregiving of over 1500 inmates in a maximum security prison; and have a wonderful relationship with the therapeutic Tapestry Project of the Ohio Reformatory for Women, where every month through Skype or Zoom our children sing for the women, the women sing for the children, and then they sing together – and the women make some beautiful gifts for “their” Sunflower children. They even have a beautiful Sunflower Wall in the Tapestry room.
Some of our community teenagers are presently participating in a creative poetry project with Rosetta Life called “Dream a Difference” and we look forward to a partnership with a young Rap Group in the UK this year.
I refuse to let my dreams slip by,
Above all I refuse
To be forgotten; my existence matters.
I refuse to lose hope, to give up
To wipe these tears on my face
They tell a story of my journey
They tell how far I have come
And how strong I am. They are
A rainbow of my pride.
Mathabo (16 yrs)
From her poem “I Refuse!”
Dream a Difference Project 2019
Numerous books and articles have been written about Sunflower Children’s Hospice, films and documentaries have been made, stories told and memories created. Awards have been received and many gifts donated. Sunflower Children’s Hospice is part of the life-story of thousands of individuals – our child patients and those who have us helped provide hospice care for 22 years (or 29 including the children’s hospice care given prior to establishing the children’s hospice); and is an integral part of Bloemfontein’s health and social care system. However, our greatest achievement is in the difference we make to improve the often short lives of the children we care for.
“Every child is my child”