Bredell parents mourn the loss of baby Eliana-Raven after brave battle

Anita and Juan Johnstone of Bredell have announced the heartbreaking loss of their daughter, Eliana-Raven, who died on April 13.

On April 3, Kempton Express reported on the family’s appeal for donations to help save Eliana-Raven’s life.

Born at 36 weeks, Eliana-Raven was diagnosed with Down Syndrome and faced numerous serious medical challenges, including heart complications and an overactive thyroid.

Initially, doctors also feared she might have leukaemia, but fortunately, tests came back negative.

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At first, doctors believed her heart was pushing too much blood into her lungs, raising serious concerns.

A CT scan revealed she had Patent Ductus Arteriosus (PDA) and Atrioventricular Septal Defect (AVSD).

This meant there was an extra vein supplying blood to her lungs, an enlarged main vein leading to the lungs, and a main vein to the body that was too small to deliver sufficient blood.

Additionally, Eliana-Raven had only two heart chambers instead of four.

Following her diagnosis, the Johnstones experienced an emotional rollercoaster.

Eliana-Raven spent much of her short life in the hospital, with her condition affecting her development and feeding.

Her life-saving heart surgery, initially scheduled for January 30, was postponed to February 3, but complications because of infections in her stomach and lungs led to further delays.

On March 17, she finally underwent her long-awaited heart surgery, which was successful.

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A few days later, on March 23, she underwent another successful abdominal surgery. Despite these medical victories, her lungs had been severely damaged.

“She did not go for her second heart surgery. She was too weak and kept getting weaker and sicker,” Anita said.

“It has been very difficult, especially for me and my husband. We came home in the evenings, and she was not there. We were so used to driving to the hospital every day to see her that the first week without her was extremely hard.

“After all the surgeries, we hoped she would get better, but she had many ups and downs. One day, she got sick and could not recover. She was swollen and had many tubes in her.”

Anita said doctors told them if Eliana-Raven survived, she would likely have remained on a ventilator for the rest of her life.
“We know she is in a better place now and pain-free, but we miss her,” she said.

Eliana-Raven was cremated, and the family plans to place a remembrance bench in Albertinia and Stilbaai in her honour.
“We are also using some of her clothes to make a keepsake bear,” Anita added.