In this latest ICPCN blog, Tracey Brand, co-founder and Director of Umduduzi – Hospice Care for Children based in the province of KwaZulu Natal, South Africa, shares the story of Baby S.
His story highlights the difficulties and challenges of providing medical care when access to resources are limited, the need for good communication and the role that a children’s palliative care service can play in giving family members the power to make difficult decisions.
The story of Baby S
Baby S was born with Trisomy 21 (Down 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.
His mom sat at his bedside for 4 months
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 any more, especially as she was due to return to work.
A beautiful soul
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 but admitted they could not have had that conversation with her.
We were there to listen
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 suffer for 4 months not being able to do anything. She was finally given the power of decision-making.
Read the blog on the ICPCN website here.