A flight of hope

The rare condition Carla Lorena was born with has kept her in hospital, receiving constant medical care, since her birth five months ago.

The baby was born with a giant omphalocele, a birth defect of the abdominal wall in which the intestines, the liver or other organs protrude from the abdomen through the navel inside a thin, transparent sac.

Carla Lorena has already been through 10 operations in Bolivia, with highly qualified doctors who exhausted every option to give her a longer life expectancy, but in the end they gave up hope.

The news was devastating for her parents, who, helped by friends and big-hearted people, started fundraising campaigns at https://www.facebook.com/todosporCarlaLorena/ to raise what their little girl needs in order to live. Today, for example, a fair is being held to collect funds.

Carla Lorena’s mother explained that three months into the pregnancy the doctors diagnosed the girl’s condition and suggested terminating it. She decided not to. It was her first baby, she could not bring herself to make that decision, and she carried on with a pregnancy born of the deep love she shares with her partner of 12 years. Sonia Muñoz, 40, does not regret deciding to continue the pregnancy, because the illness brought out the best in her.

“We moved heaven and earth to get help for my daughter,” she said. The parents began an ordeal in search of the best care for their baby. They went to several private clinics that quoted very high amounts from the moment of delivery onwards, and they gave up on that idea. “My husband and I decided to sign up with the Sistema Único de Salud, Bolivia’s public health system, and we are very grateful for it,” Sonia explained.

Some doctors told her the girl would die during delivery, but that did not happen. Carla Lorena held on to life: she was born at 48 centimetres and 3.23 kilos, at eight months and three weeks, and she needed neither an incubator nor intensive care. She was strong. Three days later her father, Carlos Condori, had her baptised.

At four months she was referred to the Hospital del Niño and to Dr Gerardo Granado, who gave the family a great deal of hope and who operated on and treated the little girl with enormous dedication. He tried many approaches. On 23 July she had her first operation. Sadly, the hospital has no paediatric intensive care unit, and she had to be taken to a paediatric ICU elsewhere.

Repairing the abdominal wall required at least one operation a week, until on 10 September the doctors gave up hope, although her treating physician did not.

That same day, heartbroken, Sonia began an international campaign. The family reached out to Bolivia’s consul general in Argentina, Santos Tito, and through him arranged care for the girl at the Hospital de Niños Dr. Ricardo Gutiérrez, one of the most prestigious medical centres in the region.

To take the baby, who is in intensive care, to Buenos Aires, they looked at an air ambulance quoted to her mother at USD 40,000, but thanks to the efforts of the Consulate, the Ministry of Foreign Affairs of the Plurinational State of Bolivia and the National Hydrocarbons Agency, the cost came down to less than half.

The Ministry of Foreign Affairs secured visas for the parents so that they can stay in the neighbouring country for at least 40 days, the time the baby is expected to remain in hospital. Carla Lorena’s care at the Ricardo Gutiérrez hospital was arranged free of charge. The Ministry of Health provided a specialised ambulance with intensive care to move the baby from the Hospital del Niño to El Alto International Airport, and the National Hydrocarbons Agency supplied the 1,800 litres of fuel for the air ambulance that yesterday flew the little girl from La Paz to Buenos Aires, in the hope of saving her life with further surgery and treatment.

Even so, the campaigns continue, to cover the cost of chartering the air ambulance and the stay, as well as the parents’ living expenses in Argentina.