Increase Paediatric Palliative Care in KZN, SA

by Umduduzi - Hospice Care for Children
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Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA
Increase Paediatric Palliative Care in KZN, SA

 

It is hard to believe that we are already nearing the end of January 2022. It feels like yesterday the promise of 2021 was on the horizon only for the world to shut down because of COVID-19. What does 2022 hold?

 

As an organisation we spend a lot of time explaining that palliative care does not equate to end-of-life care.  Although many of the children we work with are terminally ill and do pass away, there are others that we are still providing comfort and support to.

 

We met CM in 2009 when he was 7 years old. CM has cerebral palsy (CP) and epilepsy. We were called to his base hospital because the doctors felt that he was nearing the end of his life. Due to his CP he had an unsafe swallow and was aspirating (getting liquid into his lungs) often when feeding. This lead to several pneumonias and the doctors felt that this particular pneumonia was not responding to treatment.  We met with CM’s mom and discussed what had been happening and what the doctors were concerned about. She was obviously devastated. With comfort being an integral part of palliative care, our focus went to that. We started some pain medicine (morphine) as well as something to help with CM’s spasms. The morphine assisted with his pain but also with his shortness of breath from the pneumonia. CM became stronger and we were able to get him home with a nasogastric tube (NGT) for feeding. There was obvious huge concern as the pneumonia had not yet resolved. We arranged a home suction machine for his mom to assist her with clearing his secretions because of his unsafe swallow.

 

It is now 2022 and CM has just turned 20 years old. He is a strapping young man, still with a NGT that the local clinic changes regularly for the family. In the last 13 years, CM has been hospitalised 3 times. One of these admissions was because the home suction machine had broken and he needed to be in hospital. A quick repair by the team and CM was back home. The other two hospitalisations were due to seizures. CM was growing and hence the dose of his epilepsy medicines were too low. Once these were adjusted CM was back home with his devoted mom and dad. CM is an adored child and we often get phone calls from his dad telling us that CM says hello. We always giggle a little as he is not verbal but know that this is the family’s way of thanking us again.

 

Palliative care is about quality of life, comfort and support. Many might say CM has no quality of life due to his underlying condition but a happier young man I am yet to meet and an absolutely dotting mom and dad.

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Tracey & L at a home visit
Tracey & L at a home visit

We are into our second year living with COVID-19 and all the implications it has had on our lives, our families and our work. As an organisation we have experienced the loss of friends and colleagues and have seen the impact that the restrictions and fear of COVID-19 brings has had on the children we work with. However, that is not the only way we have been affected. As a completely donor-funded organisation, these times have seriously reduced our income and the possibility of fundraising events are slim. Without regular income we cannot continue the invaluable work that we are doing. Thank you to all of you who are donating – we so appreciate you and your continued support.

As a NGO we, like many others, fundraise for our salaries, operating costs and the like. We as Umduduzi are providing a service to Government that without us would not happen. In 2014, the World Health Assembly ratified a policy on palliative care. As a member State of the World Health Organisation, South Africa is obligated to institute this. In 2017, the National Policy Framework & Strategy on Palliative Care was released by the Department of Health. This outlined plans until 2022. As of now this has yet to be implemented. NGOs, like us, are continuing to provide the service, to the benefit of Government, with no support financially or in terms of capacity. To date there are no State funded palliative care posts, there is no funding to palliative care organisations and yet the work continues.

Umduduzi is the only organisation of its type in KwaZulu-Natal. Without our work within the State Hospitals, children with life-limiting and life-threatening illnesses would not receive palliative care. A conservative estimate is that over a million children in South Africa require some form of palliative care every year. As one of the provinces with the highest number of children it is overwhelming.

But we are not deterred! We continue the work while trying to come up with unique fundraising strategies at night. Together with like-minded people from around the country we spend hours advocating for the recognition of palliative care as a speciality within South Africa and for the implementation of the National Policy. Again all after hours. We are committed to our patients and our cause. Hopefully somewhere within this new reality we will find a way to raise the much needed funds to continue our work ensuring that all those children requiring palliative care and their families receive it.

Despite the restrictions COVID-19 has brought to so many people’s lives, our numbers continue to increase. To date we have over 250 new patients – that is excluding all those from previous years that we are still providing care and support to. We believe in what we are doing and will continue to find a way to ensure that it continues. A luta continua!

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I can’t believe that this will be the 20th report I have submitted. It has been so wonderful sharing our stories with you and to give you a glimpse into what we are trying to achieve in KZN.

 

Our service continues to get busy and this has become more demanding due to capacity. We average 5 new referrals a week in addition to the children we are already seeing and these are spread over 9 hospitals in the greater Durban Functional Region. A large area to cover, with high demands and only 3 clinical staff of which only 1 is fulltime. But we get the work done and the lives that we get to be a part of benefit greatly.

 

The reality of COVID-19 and its impact is starting to become more obvious. I would like to tell yo about TS. TS was diagnosed with Acute Myeloid Leukaemia (AML) in 2019. AML is the more difficult leukaemia to treat and if we are able to get the person into remission the only way to ensure that they do not relapse is a bone marrow transplant. Acquiring matches in South Africa is incredibly difficult especially for our Black African population. This is mainly due to the fact that there are not a lot of Black Africans on the Bone Marrow Registry. We therefore rely on direct blood relatives but it is not always a given that they will be a match.

 

TS commenced her treatment in 2019. She had her induction chemotherapy and then her consolidation and maintenance and was incredibly fortunate to get into remission. Added to this her younger brother was a perfect match for her transplant. All the arrangements were made for her, her brother and mother to go to Cape Town (where the transplants are conducted). Flights had been sponsored and her mom had been given accommodation at CHOC House in Cape Town. There was great excitement because this was a success story we don’t often get to see. Majority of children with AML are referred to palliative care from the start because cure is so hard to achieve.

 

The date was set and then lockdown happened. They were due to fly in April 2020 and South Africa went into hard lockdown on 26th March 2020. TS and her family were unable to leave. In order to try and keep her in remission until things became “normal” her chemotherapy was continued. Unfortunately, in January 2021 she relapsed.  TS and her family were devastated as were the treating team and the palliative care team. As the palliative care team we had to explain to TS what has happened, what the plan is now and what we are hoping to achieve. TS is now 11 years old and exceptionally bright. She expressed her fear of dying, managing the chemo again and something that really haunted her was losing her hair. We have walked with her through all of these concerns.

 

The plan is to restart the chemotherapy from the beginning with some stronger drugs. TS has been very sick from some of these and is spending a lot of time in hospital. The palliative care team is providing support to her and her mom (who unfortunately cannot be with her in hospital). The hope is that we will get her into remission again and that we can get them to Cape Town and get the transplant done. This is incredibly difficult but the treating team are doing all that they can and we are there providing whatever support TS, her family and the team need.

 

The reality is that without COVID, without lockdown TS would probably be 100% better, back at school and living her life. TS is one of many children with varying diagnoses that have been impacted on by COVID-19. Due to this we as a team are seeing children who should never have been terminal but never got their chance to access cure.

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Baby S
Baby S

A new year has began and it is still as strange as 2020. I don't think anyone of us would have believed we would still be living in the time of a pandemic that has changed everything we do. Our work however continues and as the number of COVID positive cases increase we are seeing more and more people we know and love succumb - colleagues and friends. It truly is a daunting time and we continue to serve our patients as we have always done just with s few additional items like PPE.

Despite this crazy time I wouldl like to tell you a positive story about Baby S – positiviely negotiating the health system. We first met this precious chap when he was admitted to hospital with severe pneumonia requiring oxygen. He was 11 months old. His life had already been really difficult with numerous admissions and no real underlying diagnosis. His doctors were worried about the long term.

 His journey started with a difficult birth resulting in a 6-day hospital stay. His swallowing was never great and he just didn’t grow well. At the age of 2 months he was admitted again with an airway obstruction. The infections recurred and referrals to specialists continued.

Despite all the setbacks and mom being counselled that he might not survive on more than one occasion, Baby S will be 2 years old next month. He is a happy little boy and the light of his mother’s life.

This family are not on a medical aid but the child has received the best possible care in the state sector. His mother is relentless in her energy arriving to every appointment on time and enthusiastic. His medical team is made up of everyone you can think of!

Speech and language therapist

Physiotherapists

Occupational therapists

Dieticians

Social workers

Audiologists

Radiologists

Ears, nose and throat specialists

Orthopaedic surgeons

Neurosurgeons

Dermatologist

General paediatricians

Genetic specialist

Paediatric Neurologists

Paediatric surgeons

Palliative care team

And of course the countless nurses who have provided love and care at every clinic and hospital admission.

No one really knows exactly what Baby S has, but he now has a PEG (feeding tube directly into his stomach) for feeding and has started to grow and gain weight. Our role in his journey has largely been to hold his mother’s hand as she navigates their way to find the balance between the stress of hospital as a special needs parent and the joy of being Mum to this beautiful little boy.

 We are grateful to still be able to be a part of these families lives despite the madness that is going on around us. Thank you all for your continued support. I hope you all keep safe until we next meet. 

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Baby Q 2020
Baby Q 2020

I am amazed at how time has simultaneously stood still and raced during this strange time in our lives. I never thought I would live through a global pandemic that has caused such upheaval in everyone’s lives. But here we are, in October 2020 and still managing this crisis.

 

For us at Umduduzi life continues as normal. Both our play programmes have reopened and he children are delighted to have Sandra and Nomandla back. Strict PPE and sanitising is in place and the children are once again having the opportunity to play and learn during their time in hospital. This is a huge advantage as many of them are without their caregivers due to Covid restrictions within the hospital.

 

As a palliative care team we are spending a lot of time trying to negotiate parents’’ access to their children. Hospital policies have been put in place ensuring that visits are not ad hoc. This has been very necessary as we have needed to ensure that those in hospital are kept safe from Covid infection from the outside. If caregivers are going to visit they need to test first and wait for their results. If they are negative they are allowed to stay in the hospital and visit. However, this cannot be indefinitely as there are other responsibilities at home. This has been incredibly stressful for parents, children, the treating teams and ourselves as families are having to leave their little ones in hospital alone. I do wonder what the long term psychological effects of this “abandonment” might have on our future generations.

 

All is not doom and gloom though. In June 2017 I wrote about Baby Q. He was born with a severe cardiac problem in December 2016. Surgery was conducted in May 2017 but was unfortunately unsuccessful. Umduduzi assisted in getting him home and helped manage his symptoms. Although his long-term prognosis is not good I am happy to tell you he is now a mischievous little 3, nearly 4-year-old with the most amazing smile. Being at home and receiving the love and attention he needed as well as good palliative care he has had the opportunity to enjoy his life and most importantly have quality of life. This has been a huge blessing to his family. Thank you for helping us help Baby Q and his family.

 

As the year draws to a close I hope you all stay safe and treasure the time you have with loved ones. If there is one thing this pandemic has taught us it’s that. Treasure the time you have.

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Organization Information

Umduduzi - Hospice Care for Children

Location: Durban - South Africa
Website:
Facebook: Facebook Page
Twitter: @AmblerJulia
Project Leader:
Tracey Brand
Durban, KwaZulu-Natal South Africa
$14,249 raised of $20,000 goal
 
200 donations
$5,751 to go
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