From End of Life, to Growing Life

children

What stirred Irene’s heart was the effect AIDS had on children. Mothers can pass the disease onto their babies through birth or breastfeeding (reports today say 20,000 new cases of HIV are transmitted annually this way in Uganda). And when parents get sick, they have no access to medical facilities and children often have to leave school to care for their sick parents. After one HIV+ mother killed herself so as to not be a burden on her children, Irene decided “enough is enough” and built “Gloryland Junction” – IGF’s HIV/AIDS hospice, providing palliative care. In the years that followed, hundreds of patients have come through this 60-bed facility.

Fast forward to 2015, and the type of care at Gloryland Junction has changed significantly. Over 40 patients are still offered daily care here, but all of these patients are children. In the late 2000s, due to international funding, the Ugandan government made HIV treatment (ARVs) available for free at certain medical centres. Today, over 60% of HIV+ Ugandans have access to these medications.

With this advancement in treatment, mortality in our facility drastically decreased. We have not had a HIV related death in three years. And as patients became stronger and their disease became manageable, many left full time care and returned home to start their lives over. Today, no adult patients are waiting for death in IGF’s “hospice.”

But a new challenge arose. Besides the young HIV+ children who remained in the Children’s Medical Centre (CMC) for daily observation and treatment, a new problem became clear – that of malnutrition. When a mother is HIV+ and not on treatment, she should not breast feed as she can risk transmission of the disease. Most HIV+ mothers cannot afford baby formula, so babies of HIV+ mothers become severely malnourished (or risk being infected with the disease). This leaves these mothers in an impossible situation – choosing between letting their child starve or infecting them with a deadly disease.

To alleviate this burden, Gloryland Junction has morphed from HIV hospice to Children’s Medical Centre, providing medical care for HIV+ children, residential care for special cases and a malnourished babies feeding program.

In this program, nutritional and medical experts have designed a feeding program that includes formula, cow’s milk, bread, fruit, eggs, vegetables and greens to ensure that children grow up healthy and strong in their critical first years. Mothers are trained in nutrition and how to prepare nutritious food for their children using local ingredients. When the children are medically ready for discharge, IGF’s social workers make at least two assessment visits and family meetings to the child’s home to ensure that they are prepared to care for the child, so that they do not become malnourished again and have to return.

We are grateful that advancements in medical treatment have made a hospice obsolete. While the treatment in the building may have changed, the purpose is the same – to improve the quality of life of children in Northern Uganda.

If you would like to support the care of babies and young children at IGF, please visit the website and make a donation. www.irenegleesonfoundation.com/portfolio-view/gloryland-junction-hivaids-hospice/