In this blog, Tarryn Bell, co-founder of Butterfly Palliative Home in Ingwavuma, recounts her and husband Christoff’s inspirational journey to the establishment of Butterfly Palliative Home, the only in-patient children’s hospice in KZN.
My husband Christoff and I moved from Cape Town thirteen years ago to a small hospital close to Sodwana Bay called Mseleni Hospital to pursue careers in rural healthcare. He is a doctor and I am a social worker. We had only been married for a month, were in love with Jesus, and felt that we could make a difference in the lives of people living in extreme rural poverty. What was supposed to have lasted one year somehow ended up being thirteen!
During our second year at Mseleni Hospital we fell in love with a two year old baby girl at our local children’s home who had been orphaned at birth and had Hydrocephalus, inoperable Congenital Heart Disease and Down syndrome. We had hoped to adopt baby Ncami, but she quickly deteriorated and passed away in our arms six months later. This was our first personal experience with Children’s Palliative Care as well as the serious lack of placements and services available to orphaned and abandoned children in our country with life-limiting illness. As we were preparing to bury our daughter, I felt God place on my heart that we would “love and lose babies again”.
As we were preparing to bury our daughter, I felt God place on my heart that we would “love and lose babies again.”
We served at Mseleni Hospital for seven years and in that time had also had our first biological daughter, Illy, and adopted our son Joshua from the Eastern Cape. Josh was also orphaned at birth due to HIV/Aids and has Down syndrome and Autism.
Move to Ingwavuma
After 7 years at Mseleni we felt God lead us to another community about 2 hours away named Ingwavuma. Ingwavuma is a lot more isolated and situated on a mountaintop bordering Zululand and Eswatini. We bought a house and land close to the new hospital that Christoff would be working at and I moved our previous NGO over to conduct community upliftment programmes. After only a few months in Ingwavuma we received a phone call from a Child Protection Unit (CPU) in Johannesburg asking us if we would consider adopting another child with Down syndrome as one had just been found discarded in bushes outside of Soweto Soccer Stadium. A jogger had heard a noise and stumbled upon baby Si – estimated to be six months old at the time and severely emaciated and dehydrated. We declined to take him as we already had our hands full with Joshua.
After a few days the lady phoned again and said that the baby had been diagnosed with a serious life-limiting condition named Edwards syndrome (Trisomy 18) and was given only a few weeks or months to live. No foster families or Places of Safety were willing to care for him knowing that he would soon pass away. We felt convicted and were reminded of God’s promise that we would “love and lose babies again.”
No foster families or Places of Safety were willing to care for him knowing that he would soon pass away. We felt convicted and were reminded of God’s promise that we would “love and lose babies again.”
And so we drove to Johannesburg to fetch our foster baby. We decided to use the command to care for orphans and widows practically and trained a few local widowed ladies to help us care for baby “Si” and after a week with him another very ill and severely abused little girl joined our foster home.
Building Butterfly Palliative Home
We quickly realised that we were the only home in KZN providing in-patient care to dying babies and that there was no dedicated Children’s Hospice, apart from Umduduzi, who provide paediatric palliative care consultations. With the help of various hospice role-players we provided full-time care to six terminally ill foster babies at a time and dreamed of opening a Children’s Hospice. At the time we were mostly funding all of this, including the staff salaries, out of my husband’s salary from the hospital. We bought a piece of land adjacent to our home and with only R2000 in the bank we tackled the building process which was estimated at about 2.5 million ZAR. With the help of numerous volunteers and donors we opened our new 12-bed Children’s Hospice a year later. It was indeed a miracle and to this day I cannot say where all the funds came from apart from praying and finding anonymous funds in our Butterfly account the next day!
It was indeed a miracle and to this day I cannot say where all the funds came from apart from praying and finding anonymous funds in our Butterfly account the next day!
Tarryn and Christoff at the opening of Butterfly Palliative Home in July 2022
Butterfly Palliative Home is the first and only dedicated Children’s Hospice in KZN and one of only three in the whole country and in July this year we celebrated our 1-year anniversary. We care for 12 in-patient children at a time from all over South Africa with any serious and life-limiting illness. Our services are 100% free of charge and we are 100% donor funded. We have a multi-disciplinary team of 32 staff members, all of whom live in the local community.
In July this year we celebrated our 1-year anniversary.
Celebrating the one-year anniversary of caring for children in the beautiful Butterfly Palliative Home – July 2023.
You can volunteer at Butterfly Home
Butterfly Palliative Home is always in need of on-site volunteers to help with our everyday activities. Volunteers can either be medical or non-medical.
Medical volunteers (of which we are in great need) include:
– Occupational Therapists
– Physio Therapists
– Speech and Language Pathologists
– Home-based Care Workers
Other activities for volunteers include helping to care for and stimulate our butterflies; food gardening; cooking; building and maintenance; fundraising; admin and tech support; as well as helping our staff with their own families when they need to tend to the butterflies.
We have accommodation in our rustic 4-bedroom volunteer house which is self-catering and free of charge to volunteers.
Anyone who has a passion for Jesus and for lending a helping hand is welcome to volunteer. We do prefer that volunteers commit to at least two weeks or more since it involves a lot of time and admin. But please send me a message via email if you are interested and we can have a chat!
About the author
This blog was written by Tarryn Bell, co-founder of Butterfly Palliative Home. Tarryn and her husband, Christoff, started Butterfly Palliative home in 2018 to care for orphaned and abandoned babies from all over South Africa who need end-of-life care. They have fostered more than seven babies and continue to take in young children who need palliative care. They dream of a South Africa where babies are not simply discarded because of a palliative diagnosis but are welcomed by loving families who will tenderly care and provide for them until the end. Tarryn runs Butterfly Palliative Home part-time and spends the rest of her time taking care of their family.
Find out more at: https://butterflyhome.org.za
Follow on Facebook: https://www.facebook.com/butterflyhomeza
Learn more about paediatric palliative care
If you wish to learn more about paediatric palliative care, PatchSA offers online training through their online learning platform, Patch Academy. All courses are accredited with General and/or Ethics CPD points from the Colleges of Medicine of South Africa and two of the courses are completely free. To find out more, please visit the Patch Academy website at www.academy.patchsa.org