Aug 22, 2018

Increase Paediatric Palliative Care in KZN, SA

Policy change is happening! The Department of Health (DoH) is realising the importance of palliative care and is looking for ways to start implementing it. This is a very exciting time! As a team we have been involved in assisting the local DoH in identifying the needs and how to possibly meet them. Although the focus is still very adult-based, our voice for the needs of children is loud and we are being asked for our opinion and input more often. With services potentially increasing in the future, more children will receive invaluable care in the form of palliative care. The role of Umduduzi will still remain essential as the need is great.

As mentioned last time our play programme had to move from Clairwood Hospital to Prince Mysheni Hospital. This move has been a great success. Nomandla, our play co-ordinator, is busier than ever and loves the new challenge. The children and the staff have benefited greatly from the programme and we are seeing children thrive in a hospital setting due to the additional stimulation, care and support.

Every day Julia and I are amazed by the families and the children we work with. So often the voice of the child is underestimated and unfortunately often ignored. As adults we often feel that we are protecting our children by keeping the reality of their illness away from them. Conversely, these children often feel that their illness is not a topic to be discussed with adults and therefore hold onto their thoughts and feelings. Being brave enough to have these discussions often helps families cope better and help the child prepare for their death.

We had the privilege of meeting SS, a 9-year old boy with leukaemia who had been receiving treatment for 2 years. He had initially responded very well but sadly relapsed, developing brain involvement and his vision was deteriorating. The haematologists, as a last attempt, tried radiotherapy but within a few sessions it was clear the treatment was not helping. Our team met with him and asked how he was doing. “Doctor, I want to know just one thing, is my cancer gone or is it not gone.” With trepidation we replied “It’s not gone my boy. It’s getting worse. That’s why you can’t see so well. “ He smiled with an aura of understanding, “Oh, so what are you going to do?” With a grin we asked “We don’t know, what do you think we should do?” Emphatically he told us that he was not ready to stop fighting and that we should give him more chemo or put him back in the machines.

His radiotherapy was continued until a week later he told his mom, “I am coming home. There is nothing more they can do for me.” His mom contacted us asking what he meant. When we went to discuss it with him his response was, “Oh come on Doc, your machines and chemo didn’t work. The only one who can help me now is God. Let me go home where they can pray for me. I am not scared to die. I just worry about my mom”.

A few months later he died at home surrounded by family, just as he wanted. Without his bravery, telling us what he wanted and what he needed, there is a chance he would have died in hospital away from his family. By having this discussion he got what he wanted for his last days and his family got to celebrate his life the way he wanted them to.

May 29, 2018

Increase Paediatric Palliative Care in KZN, SA

Our work continues to grow and more lives are being touched. Since we last spoke our neonate referrals have been on the rise. The experience of neonatal palliative care is varied. At times we know the diagnosis prior to birth so we are able to be a support to the family prior to the birth of their baby and afterwards until the baby passes away. Many times however we are involved after the birth when the diagnosis is made. This is often more difficult as the family were not prepared for their baby to be sick and supporting them at this time is very complicated and emotionally draining. However, through our intervention these families have had, where possible, the opportunity to take their little ones home and to experience being parents even if it is only for a short time. 

A case that comes to mind is Baby S. He was diagnosed with (a rare congenital neurological disorder shortly after his birth. The family spent weeks in ICU not knowing that there was an opportunity for him to be at home, to be loved by his brother and other family members. Only the parents were allowed in his ICU room which was an incredibly lonely and difficult time. The family was referred to Umduduzi and we were able to talk through Baby S's prognosis and the importance for them to be a family for the short time he had. The family were obviously anxious and concerned especially around nursing care and monitoring as he had been watched 24 hours a day by a medical team. We spoke through all the possibilities, all the necessities and what would make them the most comfortable. The family were desperate to get him home and made the decision to take him. Baby S spent one glorious week at home with his parents, brother and grandparents and die peacefully in his dad's arms. “We never knew that we could have him at home. Despite there being nothing the medical team could do for him, we thought we were destined to spend what time he had in hospital. Without Umduduzi that would have happened” – Baby S’s dad.

Our play programmes continue to thrive. Unfortunately due to changes in the Department of Health’s vision, Clairwood Hospital has become a Kangaroo Mother site. This has meant that they are no longer admitting children so our programme has come to an end there after many years. All however is not lost and we have started a new programme at Prince Mshiyeni Hospital in Umlazi. This service has been well received by the staff and children alike. We look forward to this programme growing from strength to strength.

King Dinuzulu provides different challenges in that we are trying to focus more on an ECD programme. These little ones are away from home for a minimum of 9 months thus losing out on valuable socialisation as well as school readiness. Our co-ordinator there is working hard on these issues.

Without regular support from people like you this invaluable work would cease to exist. As a team we would like to thank you for your continued support and encouragement.

Feb 28, 2018

Increase Paediatric Palliative Care in KZN, SA

It’s that time again! I hope that the start of 2018 has been good. For us we have hit the ground running. We often don’t realise the level of vulnerability that our patients and their families experience; being at home with a terminally ill child hoping that they are doing everything they can to ensure their comfort. I feel that this vulnerability was more evident to us as a team over the December period. Majority of services are not running at full capacity as many people are on holiday and families don’t feel that they can “interrupt” family time. Between Christmas and New Years two of our little ones started deteriorating. The families very reluctantly contacted us; continually apologising for disturbing our family time. That selflessness left me speechless. At one of the most critical and difficult times of their lives and they are worried about disturbing us.... Again it made me realise the incredible privilege we hold – being there for a family at their most desperate time of need, often being nothing more than a friendly, caring voice. Both of those precious ones left us on 1st January 2018 – a bittersweet start to the year but a humbling one that made us realise how blessed we are and made us hold our families that little bit tighter.

 

But not all is sad. The resilience of children never seems to amaze us. Their resilience together with their parents’ tenacity often leaves us speechless. One of these children is 5 year old E. She was diagnosed with a brainstem glioma which did not respond well to treatment. The team were called in as the doctors felt that there was nothing more they could offer E and she was deteriorating rapidly. The doctors hoped that we would be able to get her home, help the family deal with her symptoms and ensure she had a peaceful death. That was in September 2017. Over November her condition deteriorated even more. She went from being wheel-chair bound and communicating slightly to not being able to sit, communicate and often appeared unconscious. We discussed with the family that the tumour has grown and it looks like the end is near. We improved her pain control, provided the family with all that they would need to keep her comfortable and spent time doing pre-bereavement work.  Imagine our utmost surprise when in December the family called us to say she had woken up and was communicating with them again. E has slowly improved and today is walking (although not that steadily) and talking. Although her prognosis is still poor her quality of life is amazing. Her greatest joy is going in her wheelchair to the local shopping mall to window shop! Resilience, tenacity and good palliative care – that’s the only way to describe it!

 
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