Patient NM was born on 30/09/2021 at 36 weeks’ gestation with transposition of the great vessels, ventricular septal defect and pulmonary stenosis. Due to this complex cardiac disease the patient developed secondary chronic lung disease, severe acute malnutrition and failure to thrive.
The patient was not a candidate for correctional cardiac surgery and only went for Palliative Cardiac Surgery on 02/11/2021. While in hospital the patient suffered pseudomonas sepsis, pneumonia needing ventilation and acute kidney injury. The patient remained oxygen dependent throughout.

The patient was admitted to Lambano Sanctuary on 04/02/2022 from Charlotte Maxeke Hospital for palliative care awaiting further palliative surgery. Vital Data on admission: Heart Rate: 140 b/min; Saturations: 72% on 2 L oxygen; Temp: 37.4 degrees; Weight: 3.4 kg.

Clinically, the patient was clearly having respiratory distress and lethargic. The patient had a Nasogastric Tube in-situ.

There were a few episodes where the child seemed pre-terminal and the possibility of the child passing away seemed imminent. Support was provided to the family throughout these difficult times by nursing staff, the social worker and counsellor. The child recovered after these episodes.

Palliative Care Services Offered:

Medical:

• Symptom Management by adding morphine to alleviate respiratory distress, adding Lacson and Fleet enema (via Ng-Tube as required for constipation).
• Feeds adjusted slowly as tolerated to improve weight gain.
• Caregiver training done with the mother.
• Transporting the patient to hospital follow-up appointments with oxygen and a nurse.

Social:

• A home visit was done by the social worker and it was found that home would be suitable for the child when ready for discharge.
• However, the father of the patient was not yet accepting his child’s condition and was very fearful of the child coming home while the mother wanted to go home with the child.
• It was established that there is social support at home.
• Assistance was provided to apply for home oxygen.

Psychological:

• Extensive counselling done by the Professional Counsellor to support the mother and the father during the process of acceptance and dealing with the fears of taking the child home, especially the father.

Spiritual:

• It was established that both the mother and father are Christians and that they have spiritual support from their Christian Community.

Current Progress:

The patient is still at Lambano Sanctuary, almost 3 months later. The patient’s condition is much more stable now with no episodes of deterioration for the past few weeks. The patient has slowly gained weight and developmentally the patient has shown improvement and is now interactive and smiling.

Counselling of the parents has continued throughout with ongoing support and the father became more comfortable to take the child home. Once the home oxygen was ready, the child went home for pass-out. Our support at home continued through our home-based care services which includes medical and psychosocial.

After being at home for a while, Baby NM deteriorated and was brought back to hospice where he unfortunately passed away.

Lambano Sanctuary continues to provide the mother and family support and bereavement counselling.