A new blog post from Dr Julia Ambler, Medical Director at Umduduzi Hospice Care for Children in Durban, on holding space with families facing the most devastating decisions.
This week has pressed heavily on my heart. Twice, I have sat with families in the quiet corners, speaking words no parent ever wants to hear; the machines keeping their child alive are no longer serving them, and that it may be time to let go.
The first was a child with a delayed diagnosis of tuberculosis of the abdomen. Such a sneaky disease that caused troubling symptoms for months and was only diagnosed when in the operating theatre, the surgeons found extensive bowel perforations that could not be fixed. The family was offered time to come to terms with the devastating news, but the fierce desire to protect their child from suffering led to the decision to withdraw that night. They knew what they had to do.
The second was slightly older boy with fulminant hepatitis A, whose brain stem had ceased to function. Brain stem death is a clinical certainty but explaining it to grieving parents – who still held their son’s hand, whispering prayers – felt like tearing open a wound. They asked few questions somehow accepting the weight of the truth; their child was gone, even though the ventilator still made his chest rise and fall.
I am humbled by the sheer strength of these families who even in the darkest hour can parent to the bitter end; protecting, caring and loving enough to let go.
Another layer of support
As a paediatric palliative care doctor, I am just another layer of support. The primary treating doctors and nurses, build the trust and sit in the pain, offering the minute but minute care required in the ICU setting. I believe these decisions could be made quickly because of this trust and the understanding that the desire was always to cure. The medical team’s sadness was palpable.
I carry these conversations long after they end. I replay the words I chose, the silences I allowed, the tears I witnessed. Each family teaches me something new about courage, faith, and love.
This week reminded me that:
- Medicine is not only about saving lives, but also about honouring endings.
- Compassion is not measured in cures, but in presence.
- Withdrawal of ventilation is not abandonment, but the final act of care.
Two cases in one week are a heavy burden. Yet, it is also a privilege — to walk alongside families at the most fragile moments of their lives, to hold space for their grief, and to ensure their child’s final journey is gentle.
I leave these encounters humbled, reminded that in paediatrics, our greatest gift is not always prolonging life, but ensuring that when life ends, it does so with dignity, compassion, and love.
Read the original blog post here.
Umduduzi means ‘the Comforter’ in Isizulu. As a donor funded NPO we provide palliative care to children with life-threatening and life-limiting illnesses in KZN, South Africa. Click here to support our work.
About the author
Dr Julia Ambler, a medical doctor, is the co-founder and Medical Director of Umduduzi Hospice Care for Children, a fully donor funded children’s palliative care organisation providing compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life-threatening or life limiting illness within KZN through direct patient care, and mentorship.
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