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PATIENT STORIES

Meet Nicky Black (pseudonym)

When Nicky Black* was 5 months old, she weighed a meagre 3.6kg. Sadly, Nicky is HIV positive and one of many paediatric infectious diseases patients treated at the Red Cross War Memorial Children’s Hospital, admitted for medical complications that their sick bodies cannot cope with. Nicky had not been feeding properly for some time and the medical team at the Hospital arranged for her to have a special X-ray test, during which they observed a tight narrowing of the oesophagus.

The Hospital’s specialist surgeons performed a flexible telescope examination, which showed the narrowing was so tight that the telescope could not pass through. Under the same anaesthetic, it was decided to make an opening into the stomach and pass a very thin guide-wire from the mouth into the stomach, which gradually results in the widening of the oesophagus for better feeding. Nicky had been unwell since birth and had whooping cough, gastroenteritis and very fragile skin.

Nicky’s mother recalls how the nursing staff urged her to go home to her family and remembers the amazing care her baby received while she was away. Weeks later, Nicky was transferred to a dedicated palliative care centre, where she was given anti-retroviral medication but this young fighting spirit never gave up and was sent home to her family soon after. Nicky’s mother says she is a lively baby now and not as weak as before.

Nicky’s mother only found out about her own HIV status when she was already six months into her pregnancy. She has two other children and never suspected she had the virus until a routine test detected it. She was also worried about financially coping but fondly says of the Hospital, “I would never have been able to afford all the medication Nicky has to take and the special milk formulas. My baby would probably not have been here if it weren’t for the care she received from this Hospital”.

* Real name has been changed to protect the identity of the patient and family

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