Feb 3, 2021

Increase Paediatric Palliative Care in KZN, SA

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. 

Oct 7, 2020

Increase Paediatric Palliative Care

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.

Jun 10, 2020

Increase Paediatric Palliative Care

What crazy times we are currently living in! The COVID-19 pandemic has touched everyone’s lives in some ways and no-one is sure when “normality” will return. We can guarantee that whenever that is it will be a normal like nothing we have ever seen before.

 

As South Africans we went into total lockdown on 26th March 2020. No-one, except essential services were allowed to leave their homes. This has basically continued on varying levels since 1st June 2020. Many people have lost their jobs and families have been affected on so many levels. As an essential service we have continued our work, visiting hospitals and where possible doing home visits – permits to travel in hand. Our families, who already experience a high level of stress given their children’s’ diagnoses, are even more stressed. Do they bring their child to the hospital for their appointment? Will they get COVID-19 if they travel? What would a COVID-19 diagnosis mean on top of the existing condition? Do we let someone from the home go and buy food? Can we afford food?

 

Our services have warped slightly in this time becoming more of an advice station and a food supplier. Many of our families no longer have any form of income as they were not permitted to continue their specific line of work during lockdown. Some still have been unable to earn a living despite some of the restrictions being lifted because what they do for a living is still banned. Families are desperate and we have stepped in where possible to assist with food vouchers and food parcels. Unfortunately, these only meet the need for a short time and we ourselves have limited resources because of COVID-19.

 

As a donor-funded organisation we rely on fundraising initiatives to raise money. With the onset of lockdown all of our planned events were cancelled and it is unlikely that the rules will change before year-end to allow us a chance to raise much-needed funds.

 

The world has changed forever but the need for palliative care remains. Thank you to everyone that has enabled us to do out work – to provide comfort and care to children with life-limiting and life-threatening illnesses – something that has become even more imperative in the time of COVID-19

 
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