March 21 is Human Rights Day
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PatchSA March 2018:A Child’s Right to Palliative Care
Joan Marston: ICPCN Global Ambassador for Children’s Palliative Care 
Sunflower Children’s Hospice, Bloemfontein
Palliative care has developed from a niche or “nice to have” element of health care, predominantly the responsibility of civil society and NGOs, to global recognition of palliative care as an integral part of health care and health systems, and part of the whole continuum of care, especially since the passing of the historic 2014 World Health Assembly Resolution 67.19 on palliative care.
While specific reference to palliative care is not included in international declarations and conventions which include the child’s right to health, that right can now be seen as including palliative care in the recognised right to the best attainable standard of health. This has been universally accepted and enshrined in international documentation from 1924 when the then League of Nations included the right to health when they adopted the Geneva Declaration on the Rights of the Child, to the most ratified convention in history, the UN Convention on the Rights of the Child (UNCRC) which was signed in 1989 , and is universally accepted as the framework for children’s rights everywhere.
To see the rest of this story, please follow the link below:
http://patchsa.org/a-childs-right-to-palliative-care/
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Recognising that those caught up in humanitarian crises and longer-term refugee and migrant situations have very little or no access to palliative care PALCHASE brought together concerned individuals from different countries to work collaboratively on advocacy, education, standards and research. Recognising that over 50% of refugees are under 18, palliative care for children will be an essential part of the response. Presently co-chaired by Dr Brett Sutton from Australia and Joan Marston from South Africa, the group has been hosted by the International Association of Hospice and Palliative Care (IAHPC) ; has worked with WHO on developing Guidance documents for palliative care in humanitarian emergencies; has contributed to the Sphere Handbook (used by humanitarian response agencies and WHO) Standard on palliative care ; has been published in the Lancet, is advocating with different humanitarian aid organisations and has been involved in international and local research projects. The PALCHASE core group was recently involved in a rapid assessment of palliative care needs of the Rohingyan refugees in Bangladesh and is working to raise funds set up a pilot project in Bangladesh and carry out more in-depth research. The final report and a short film will soon be shared. The PALCHASE website is hosted by Cambridge University www.phpc.cam.ac.k and we have a Facebook page .
Anyone interested in joining PALCHASE can send an email to Joan Marston joanmarymarston@gmail.com
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 Madeleine's Story: Living with Edwards Syndrome
by Helen Malherbe (Photo: right)
Executive Director: Genetic Alliance South Africa
Madeleine Eva Malherbe was born on 14 October 2004 and died on 24 December 2004, living for a total of 71 days. She was born with Edward’s Syndrome (Trisomy 18), a life-limiting chromosomal abnormality.
During our 3D scan at 32 weeks gestation that it was picked up that she had bilateral club feet. This had not been identified by our gynaecologist at any previous pre-natal scans. I was immediately referred for a comprehensive scan which revealed intrauterine growth restriction (she was small for her gestation) and there was poor blood flow via the placenta. I was signed off work on medical grounds and we prepared for her birth by researching club feet - and identified the only orthopaedic surgeon in South Africa that had just initiated the Ponsetti method.
However, we were totally unprepared for her birth. She arrived early (36 weeks) via caesarean section at a private clinic in Johannesburg, despite attempts to stop labour. She cried once and immediately stopped breathing, with an Apgar score of only 2. The theatre staff commented on the huge amount of amniotic fluid – which we only realised later was another indicator (polyhydramnios) of a chromosomal abnormality. She was rushed to the Neonatal Intensive Care Unit (NICU) as there was not a tube small enough in theatre to intubate her due to her extremely small features, another sign of her condition.
Initially, other than her club feet and being very small (she weighed 1.7kg) and facing all the challenges accompanying a premature baby including breathing difficulties, jaundice and apnea - we had no reason to believe that there was anything seriously wrong with Madeleine. She was fed breast milk via an NG tube and underwent treatment for jaundice. However, as the days passed, our paediatrician began to identify more serious issues and he ran tests to rule out different diagnoses.
When Madeleine was seven days old we received the results of her genetics test, behind a curtain in the corner of the NICU. We were told that she had Trisomy 18 (Edward’s syndrome), a condition that ‘is not compatible with life’. Only then were we finally able to hold her for the first time, whilst still connected to her ventilator. While Edward’s was a condition I recognised from my undergraduate genetics text book – it was not something I ever expected to have personal experience with. We were told little else and the paediatrician walked away. We later sought genetic counselling at the University of the Witwatersrand to check for the risk of reoccurrence.
Madeleine remained in the NICU for the first five weeks of her life. Her apneic episodes increased in frequency, and further tests revealed her brain was under-developed and she had a congenital heart defect (ventricular septal defect). She also started having minor fits. Her paediatrician asked us to set limits for intervention for when she stopped breathing. After much discussion and prayer, we decided that she would not be intubated if she did not start breathing again herself. While we wanted to fight for her and have her with us as long as possible - we did not want her living on a machine indefinitely or to suffer unnecessarily.
Please see the rest of this moving story on our website. Follow the link below:
http://patchsa.org/madeleines-story-living-with-edwards-syndrome/
Madeleine Eva Malherbe
In loving memory
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Upcoming Events
http://www.icpcnconference.org/en/home/
Book now for this upcoming international conference right here in South Africa! Please share this information with colleagues working with children.
and.... coming up in 2019....
APCA (African Palliative Care Association) Conference 2019
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