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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

As a team we are starting to see more and more teenagers. Within the South African Health Care System once a child reaches 12 years of age they are seen as adults and are moved out of the paediatric wards into the adult wards. This in itself presents huge challenges as they are so young yet their caregivers are not allowed to stay with them as they are in the paediatric wards. As an organisation we see children up until the age of 18 years.Our work has started to be recognised by the adult practitioners and therefore we are receiving more referrals from them.

 

Teenagers are tricky at the best of times but add a life-threatening or life-limiting illness into the mix and the challenge is greater. having said that though some of our biggest lessons have come from this group. Take Patient L. He is a 17 year old boy with an osteosarcoma (a bone cancer) in his left leg. He has gone through all his treatment, which included an amputation, and was for a short time in remission. His cancer however returned in November 2019. His parents were very keen for him to start treatment again.Shortly after Christmas he sat them down and said he does not want any more treatment. He told them that he knows he is dying and that he is ok with that. He told his parents they have 2 months to mourn him because he has started a NGO and they need to continue his work. L also decided he wanted to plan his own funeral. He has written down exactly what he wants to happen - who is talking, what songs are being sung and what Bible readings. He has also met the undertaker and designed the pew leaflet (which he's asked to see a proof of!). 

 

It is incidents like this that truly highlight the importance of palliative care. L has known from the outset what his diagnosis is, what treatment options are available and what would happen if the cancer came back. He has therefore been able to have honest conversations with his parents as well as make choices that work for him. His family in turn have been able to prepare themselves emotionally for this time and they are making beautiful memories together. They also know that when he does die that they will be fulfilling his every wish for his funeral service. Meeting someone like L has been a very humbling experience and one that has entrenched for all of us that the work we are doing is important. 

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It is difficult to comprehend that 2019 is almost complete. It feels like yesterday that I was wishing you all a Happy New Year. I hope that 2019 has been good to you.

 

New challenges continually to arise in the field of palliative care. Within our health system children are seen as adults from the age of 12 years. They are no longer in the paediatric wards, but rather with all the adults. As an organisation, even though we use the word paediatric, we see children up to the age of 18. Through word of mouth within the hospitals we work in, adult practitioners are now referring their teenage patients to us. This has obviously increased our workload, we would love another clinician, but there are also so many issues other than the diagnosis to deal with.

 

For example, we are working with a lovely young man M.R. He is 14 years old and has been diagnosed with an osteosarcoma of the leg (a cancer tumour in the bone of his thigh). Unfortunately the cancer has spread to his lungs and his prognosis is poor. One of the difficulties we’re encountering in working with these adolescents is the way in which the system treats them. They are technically seen as adults and therefore are spoken to about their disease, treatment options etc without their parents present. Which leads to the other challenge, parents are not allowed to stay with their adolescent children while they are in the ward. A very scary place.

 

While some teenagers are older than their age, many are still very young. To have the burden of all that information put on you with no one there to help you understand and process can be quite intimidating and overwhelming.

 

M.R. was in such a position. We had already met him before he found out that his treatment had failed and there is nothing more that can be done curatively for him. When the doctors came to discuss his scan results with them he point blank refused. He phoned our doctor to see if she was in the hospital. Luckily she was and she went to his ward. The doctors then gave him the results and left. Julia was able to sit with him and explain what exactly everything meant and to comfort him. She was also then able to sit with M.R. and his family and explain everything and discuss other options. Both M.R. and his parents stated that without our intervention they would have felt alone, confused and panicked.

 

We cannot change the system, but we can do is try where possible to meet those adolescents and try and help them understand what is happening to them and just be there for them when their parents are unable. This new angle to our work is challenging but at the same time a blessing. We have truly been humbled by the way some of these young souls are dealing with such big news.

 

Thank you for helping us ensure that we can be there for them and for all the paediatric patients we see. Without your support none of this would be possible. I wish you and your loved ones a blessed festive season and I look forward to talking with you in 2020.  

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Thando and his new wheelchair
Thando and his new wheelchair

Hi! Its really exciting to share our news with you again. 

 

A while back I introduced you to one of our kids, Thando. He is a 12 year old boy with a condition called Polymyositis. This is an uncommon  inflammatory disease that causes muscle weakness affecting both sides of the body. There is no cure for this disease and currently Thando has some use of his fingers and can move his head and neck. One of our greaest challenges has been keeping Thando stimulated at home. Given his condition he cannot take himself outside in his wheelchair, he cannot feed himself, he cannot go to school. Thando relies on his family for everything.

 

We have tried to get him back to school but the distance is too great and Thando is exhausted before he gets there. In addition to this, because he cannot do anything for himself, he is reliant on someone at school to wheel him around. This has not been that easy.

 

Pallliative care is not just about end of life care or care for terminal conditions. It also invovles providing comfort to the child's mind, body and spirit. Thando was becoming depressed and we needed to find a way to make him more independent and treat his mind and his spirit.  After many months of negotiating and some help from the local hospital's Occupational Therapist, Thando's dream was finally realised - a motorised wheelchair. With this Thando is able to mobilise himself by using his chin. We were all speechless as he left the hospital on his own for the first time ever! His smile is something we will all remember. 

 

We have been blessed with donations to help make Thando's home more wheelchair friendly so that he can go outside when he wants to. Thank you to all those who made this possible.

 

Thando is experiencing independence for the first time in a very long time. He can move himself around when he wants to and no longer has to wait for someone to help him. Our next challenge is getting him back to school! 

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Hello! It feels like yesterday that we were celebrating the New Year and here we are at the end of May already. Time really does fly! This time I want to tell you about Baby S. This story is unfortunately not unique in our setting. It also highlights the role of palliative care early in diagnosis and not waiting until a situation like this.

Baby S was born with Trisomy 21 (Downs Syndrome) in January 2019. As with many babies with Trisomy 21, he had a severe cardiac problem. After assessment by the paediatric cardiologists it was determined that surgery would not be an option at that time as his lungs were weak and his weight was low. The cardiologists wanted to reassess. Given the burden on our health care system and the fact that there is only one place within the province to receive paediatric cardiac surgery for State patients, surgery was booked for 2020.

In essence all well and good, but Baby S was oxygen dependent. This meant that he could not go home. His mom has sat at his bedside at his base hospital for 4 months, the whole of her maternity leave. Eventually someone from base hospital called Umduduzi in. They were not sure how to help this mom and Baby S anymore especially as she was due to return to work.

We met with Baby S’s mom – what a beautiful soul. We discussed what was happening, how bad the cardiac problem actually is and how weak Baby S still is. His mom very bravely asked what would happen if we stopped the oxygen. As difficult as it is we had to tell her that the oxygen is keeping him alive. She looked at her beautiful little boy and told us it was time. He has suffered enough and this was no life for him or for her. She took him in her arms, kissed him gently, told him she loves him and said goodbye. He died peacefully in her arms feeling so loved.

Many of the doctors came to us afterwards and asked if we had meet the mom before. We told them that this was the first time. They were astounded as to how we could have achieved what we did in such a short space of time. They have known her for months and they could not have had that conversation with her. For us this highlights palliative care. We met the mom not knowing what she wanted and not really having a plan ourselves. We were there to listen, to answer what questions we could and give the mom options. We gave her power; power to make decisions and power to ask the difficult questions. This power should have been given to her right at the beginning and that is where late referrals are so difficult on everyone – the parent, the treating team and us.

Although not a happy outcome it was a peaceful one and Baby S’s mom feels that she did what was right for him. She had watched him suffering for 4 months not being able to do anything. She was finally given the power of decision-making.

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Wow! I can hardly believe that it is already February 2019. Where does time go? 2018 was a good year for Umduduzi - Hospice Care for Children. Our work keeps growing as more health care professionals realise what we can offer them and their patients. While that is awesome for the patients because it means they are getting the care they deserve, capacity remains an issue. As a team we work to ensure that every family is seen and that they are given the care and support that they need. A tough task sometimes with a team of 3 but we believe in what we do and so find a way to make it happen. 

 

Sometimes our work takes us out of our area of expertise but it is what our patient needs. Palliative care is holistic care. It is about meeting the needs of the child - body, mind and spirit. Take for example NV. He is a 13-year-old boy with a very rare condition called polymyositis. Polymyositis is an inflammatory disease that causes muscle weakness affecting both sides of your body. Having this condition can make it difficult to climb stairs, rise from a seated position, lift objects or reach overhead. In NV’s case, he is wheelchair bound and is unable to use his arms. He only has use of his thumbs. One of NV’s greatest needs is to go back to school. A difficult task in a rural community where roads are not accessible for wheelchairs and the distance to the school is very far. In addition to that, there are not many community schools who will accept a “special needs” child. This is incredibly frustrating as NV is an exceptionally clever young man who is being treated as if he is cognitively impaired. The only thing wrong with him is that his body doesn’t work so well.

 

As a palliative care team we have had to venture into a completely new world. We are meeting with the schools to try and promote NV’s case to be at school in a class of his peers. We are negotiating transport because his family are unable to get him to school and he cannot get himself there. We are also trying to manage the emotions of a teenage boy whose mind is active but whose body is failing. Although a challenge it is one we are willing to take on. Just because NV has a life-limiting illness it does not mean that he cannot fulfil his potential.

 

Therefore, as we venture into 2019 I would like to take this opportunity once again to thank you for your continued support. It is because of you that we are able to do what we do and that we are able to help NV meet his full potential.

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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

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