By Jaime Uranovsky
The Rohan Bloom Foundation and Paedspal are set to open Cape Townโs first childrenโs palliative care hospice.
Palliative care is vital but is often a scarce and expensive luxury that is inaccessible to many South Africans.
While there are local palliative care hospices for adults, there are, shockingly, none in the city that cater towards children. The Rohan Bloom Foundation together with Paedspal, however, have dedicated themselves to opening and running Rohan House โ the first specialised childrenโs palliative hospice in Cape Town, which is set to start housing patients in early 2020.
Rod Bloom, whose son Rohan tragically passed away from Ewingโs Sarcoma in 2016 at the age of 14, founded the Rohan Bloom foundation in the same year, as a way to honour his sonโs memory and to provide children in the Mother City with a sorely needed service โ that of in-patient palliative care.
Rod shares, โ[The hospice] has been our main goal from the very beginningโฆ. This all came out of experience that I had while on the journey with Rohan: the lack of that facilityโฆ. Thereโs no specialised childrenโs hospice in Cape Town. Children are currently either passing away in hospital wards, where they are fighting for their lives, or they are passing away at home. Most of the kids come from underprivileged homesโฆ so youโve got situations in the Cape Flats and in the townships where families live in one room or they have ten people living in a house and the conditions arenโt really conducive, becauseโฆ the hospitals, like Red Cross, donโt have the capacity to keep the kids if theyโre not treating them.โ
The Rohan Bloom Foundation was established soon after Rohanโs passing in 2016 and it was then that Rod teamed up with Doctor Michelle Meiring, the founder of Paedspal, an organisation that employs a holistic approach to palliative care for children. Rod adds, โ[The decision to open Rohan House] came about from my association with Michelleโฆ We established a bondโฆ during Rohanโs terminal time and our many discussions were all about this lack of specialised facility hospice: palliative care to house children in their dying days. When Rohan passed away and the [Rohan Bloom] Foundation was put together,โฆ [Michelle and I] decided we would join forces. Basically, [the Rohan Bloom Foundation] would find and build the house and [Paedspal] would operate the houseโฆ Paedspal consists of paediatricians, doctors, psychologists, healing therapists, physiotherapistsโฆ They are the professionals in palliative and hospice care, while [the Rohan Bloom Foundation] is doing the fundraising and putting the house together. So, itโs all aboutโฆ providing the comfort, love and care for patients and parents and siblings who are going through this traumatic time and journey.โ
Like Paedspal, Rohan House aims to โhold a whole family,โ says Rod, as opposed to dealing solely with the patient. โPaedspal provides therapy and help for the parents, the siblings and everybody involved with that child; they have a programmeโฆ Weโre going to take that system as well and put it into the hospice.โ At Rohan House, accommodation and food will be provided for patients as well as for their parents or caregivers.
For Rod, โItโs about letting a child die in dignity and as pain free as possible and in comfort.โ The facility will provide between eight to ten beds. Rod explains, โUnfortunately, each bed is only taken for about one to two weeksโฆ If the child is really deathly ill and terminal then they go to the hospice. It will be a nice little facility but there is going to be a greater demand and hopefully this will be the first of many โ itโs really desperately needed.โ In South Africa, there are no public funds allocated to palliative care at all, let alone for children, so the Rohan Bloom Foundationโs funding is all privately raised. Last year, the organisation officially launched the fundraising for Rohan House on the 24th of May โ Rohanโs birthday โ and has organised various events since.
โWeโre looking at opening in about a yearโs time; weโve already purchased the house which we need to renovate. Itโs 1.2km from Red Cross, and [Paedpalโs outpatient palliative care facility, which opened in 2016] is across the road from Red Cross, so weโre all together.โ While the Rohan Bloom Foundation is well on its way to opening Rohan Houseโs doors next year, there is still a lot to be done.
Rohan House will have a profound impact on children with terminal illnesses, as well as on their families and communities. Indeed, Rod Reflects, โWhen Rohan passed away, he suffered. He had a terribleโฆ painful endingโฆ basically he lost his dignityโฆ and I always said to myself afterwards [that] his sacrifice is going to allow other people to have that dignity and to die in peace. Another thing is that, because cancer is so rife, I made myself a promise that Rohan wasnโt going to be another statistic: just another โopen and closedโ child who dies from cancer and then is gone… Thatโs another reason why I feel so strongly about keeping his legacy alive and thatโs the promise that I made, and Iโm going to make sure that it does happen.โ
You can follow the journey of the Rohan Bloom Foundation and Rohan House:
Facebook, click here
Website, click here
Email, click here
To visor Paedspal Paediatric Palliative Care click here
To download the full PDF of the March Cape Jewish Chronicle, click here
To read the most read article of last month, click here
