Palliative Care: Simply Put
Real Stories from Specialists
A Crushing Burden,
or Why Perinatal Palliative Care Matters
A case report by Dr Anush Sargsyan, Armenia
Real Stories from Specialists
A Crushing Burden,
or Why Perinatal Palliative Care Matters
A case report by Dr Anush Sargsyan, Armenia
Palliative Care:
Simply Put
Real Stories from Specialists
A Crushing Burden,
or Why Perinatal Palliative Care Matters
A case report by Dr Anush Sargsyan, Armenia
Simply Put
Real Stories from Specialists
A Crushing Burden,
or Why Perinatal Palliative Care Matters
A case report by Dr Anush Sargsyan, Armenia
Our department received not just another patient, but a tiny, fragile newborn who had not yet had the chance to truly know her mother and father, meet her older sisters, or experience the joys of life. The nightmare for the family began in the 34th week of pregnancy, when an ultrasound revealed a large brain mass. Doctors hoped the tumour was benign and could be operated on after birth.
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The baby girl was born with an unusually large head. Her mother loved her instantly, with all her heart, but was terrified of even holding her. In her first days of life, the baby underwent surgery; histology results showed that the tumour was malignant. Shunts were fitted to drain fluid daily, and she was transferred to the paediatric palliative care department.
Perinatal palliative care is not yet a standard service in Armenia, so our entire team felt an immense responsibility towards this patient and her family. Every day, the mother was tormented by a flood of unanswerable questions: would her daughter survive, would she be able to see and hear, and how could she explain to her two older daughters why they could not see their sister? The situation was further complicated by a domestic crisis: the grandmother tried to obstruct treatment, believing that a severe disability would ruin her son's life.
Perinatal palliative care is not yet a standard service in Armenia, so our entire team felt an immense responsibility towards this patient and her family. Every day, the mother was tormented by a flood of unanswerable questions: would her daughter survive, would she be able to see and hear, and how could she explain to her two older daughters why they could not see their sister? The situation was further complicated by a domestic crisis: the grandmother tried to obstruct treatment, believing that a severe disability would ruin her son's life.
Meanwhile, the baby’s head continued to grow. Then the histology results brought unexpected news: the tumour proved sensitive to chemotherapy, offering the girl a 50% chance of recovery, but with the risk of profound disability. For parents who had already emotionally braced themselves for loss, this was a massive shock. The family took a day to reflect. Their decision was to fight for their peace of mind, to know they had done everything possible.
The girl was transferred to the oncology ward, but complications arose after her first chemotherapy injection, and she was admitted to intensive care. An urgent scan revealed that the tumour had grown even larger. It became clear that continuing treatment was pointless, and the baby returned to the palliative care department.
The girl was transferred to the oncology ward, but complications arose after her first chemotherapy injection, and she was admitted to intensive care. An urgent scan revealed that the tumour had grown even larger. It became clear that continuing treatment was pointless, and the baby returned to the palliative care department.
Meanwhile, the baby’s head continued to grow. Then the histology results brought unexpected news: the tumour proved sensitive to chemotherapy, offering the girl a 50% chance of recovery, but with the risk of profound disability. For parents who had already emotionally braced themselves for loss, this was a massive shock. The family took a day to reflect. Their decision was to fight for their peace of mind, to know they had done everything possible.
The girl was transferred to the oncology ward, but complications arose after her first chemotherapy injection, and she was admitted to intensive care. An urgent scan revealed that the tumour had grown even larger. It became clear that continuing treatment was pointless, and the baby returned to the palliative care department.
The girl was transferred to the oncology ward, but complications arose after her first chemotherapy injection, and she was admitted to intensive care. An urgent scan revealed that the tumour had grown even larger. It became clear that continuing treatment was pointless, and the baby returned to the palliative care department.
The final days were the hardest. The parents were consumed by exhausting guilt, believing they had condemned their daughter to unnecessary suffering. The guilt became so overwhelming that they ultimately decided not to be present for her final moments—only the grandmother remained by the child's bedside.
A few days after the baby passed away, I had a long phone conversation with her mother. She admitted she was still plagued by doubts about whether they had made the right choice. But she added that she could not imagine how she would have survived this ordeal without the support of our palliative care team.
A few days after the baby passed away, I had a long phone conversation with her mother. She admitted she was still plagued by doubts about whether they had made the right choice. But she added that she could not imagine how she would have survived this ordeal without the support of our palliative care team.
Dr Anush Sargsyan’s conclusion:
This story highlights the profound vulnerability of families who learn of a terminal diagnosis before their child is even born. In such moments, parents must never be left alone with the unknown. Perinatal palliative care is about more than managing an infant's physical pain. Our primary mission is to share the crushing burden of choice with the family and to help them navigate a painful sense of guilt.
This story highlights the profound vulnerability of families who learn of a terminal diagnosis before their child is even born. In such moments, parents must never be left alone with the unknown. Perinatal palliative care is about more than managing an infant's physical pain. Our primary mission is to share the crushing burden of choice with the family and to help them navigate a painful sense of guilt.
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