Dr Julia Ambler with Baby BB
JANUARY 18, 2021
The journey of accessing healthcareL: Part 1-Baby BB
Meet baby BB a 6-month old boy with bright yellow eyes. Sadly, he was born with a condition called biliary atresia. This is when the bile ducts don’t develop properly and the blockage of bile flow from the liver to the gall bladder ultimately leads to serious liver damage. If discovered early enough there is an operation that may help, but this little chap was diagnosed too late.
What will save him? Nothing but a liver transplant, for which there is an extremely long waiting list. Currently liver transplants for children only happen in Johannesburg or Cape Town, so even if they find a donor, the logistics are nearly impossible to arrange.
In the interim, BB’s liver is struggling along. He is being managed with a variety of vitamins and supplements to replace what his liver can’t produce and other than that, we wait.
At this stage they have had monthly follow up at Inkosi Albert Luthuli Central Hospital (IALCH) with the gastroenterology specialist and our palliative care team. Sounds simple?
Not so much. This family live in Nkandla, famous for Mansions and Fire Pools, but in reality a 3 to 4 hours’ drive by private car away from Durban. In order to arrive on time for their appointment, they leave home early the day before to travel to their local hospital. Here they wait until about 8pm when the overnight bus leaves. The bus winds its way through Zululand, from hospital to hospital, picking up patients as it goes, finally arriving at IALCH at about 7am.
Once they have queued to register, queued for blood tests, queued to be measured and weighed and queued to see the doctor, they finally have their moment with the specialist who more than likely breaks yet more bad news… the liver function is worsening, his immunity is very poor, keep him safe – he is at high risk for infection. They then queue at pharmacy and finally prepare to get back on the bus, only to do the whole journey in reverse to get home.
Where does Palliative Care fit into BB’s journey?
First and foremost, we listen. We listen to the fear and anguish that a parent experiences when their child is facing this kind of life threatening diagnosis. We explore their ideas and expectations, their grief and understanding. We use layman’s terms to explain liver function and what happens when the liver fails. We try to answer the question, “how did this happen?” We talk about COVID-19. We show empathy for their long journey – physical and emotional. We make space for their spiritual pain which can take many forms – Why me? Why my child? Am I being punished, are the ancestors angry? Perhaps I didn’t pray hard enough? We chat about the past, present and the future. We discuss the extended family and what this lonely mother will explain to them when she is home again. We consider the siblings and what to tell them. We talk about their bleak finances; about applying for a government grant because no one in the family is employed.
We help prepare them for the worst while always hoping for the best.
We are then always a WhatsApp or phone call away, because much can go wrong when the liver is failing and the transplant is not forthcoming.
So the reality for BB, while we hope and wait for the transplant, is that his condition will get worse and his liver will fail. His life will be a short life but not a life without meaning and joy.
However long BB’s journey is, Umduduzi will walk the path with them, providing whatever support we can.
Umduduzi means ‘the Comforter’ in Isizulu. As a donor funded NPO we provide palliative care to children with life-threatening and life-limiting illnesses in KZN, South Africa.