A premature baby born with severe immunodeficiency has come a long way in just 15 months. Born in August 2020, weighing just over two pounds, Olivia Jade Volley has had to fight to stay alive. Despite all the hardships she still faces, her mother says she is their little miracle.
Sally Volley told Grimsby Live that Olivia was born 12 weeks early by C-section after a five-day hospital stay for her mother, during which doctors decided Olivia needed to be born immediately. “We spent nine weeks at Grimsby’s Neonatal Intensive Care Unit,” she said. “We then spent a further three months at Leeds on the Surgical Newborn Ward, and then six months on Ward 3 at Sheffield Children’s Hospital. It was really difficult to see Olivia like that. It was heartbreaking.”
In total, Olivia had to stay in the NICU for 11 months before she was finally allowed home, and she’s already had 10 surgeries in her short life, as well as repeated skin and bone marrow biopsies. Today, she still isn’t able to eat by mouth.
“As Olivia was so small when she was born, she struggled to feed and put on weight,” Volley said. “She needs regular blood transfusions and immunoglobulin transfusion (to fight off antibodies) as she was born with no immune system. The doctors had to place a Broviac line, a long thin tube inserted into a child’s chest that allows for long-term access to blood, into Olivia’s body. It’s since been changed for a port-a-cath, a device that is usually placed under the skin in the right side of the chest to allow regular blood flow to the heart and allows doctors to treat her. And because she was unable to eat food by mouth, she had to receive total parenteral nutrition, a method of providing nutrition directly into the bloodstream to those unable to absorb nutrients from the food they eat. Now as she can’t take anything orally so she had a feeding peg fitted in her stomach which has just been changed for a mini button.”
Doctors haven’t been able to diagnose what specifically has caused Olivia to experience these struggles. “It’s been really difficult to see Olivia put through all this. She’s only 15 months old and has had so many problems,” Volley admitted. “Every day is a struggle, but she keeps on fighting.”
Olivia, every premature baby, and all people, deserve the very best medical care available. But the United Kingdom has been selective about which people they are determined to save; multiple children, including Pippa Knight, Charlie Gard, and Alfie Evans, have had their life support removed by the NHS because they had severe disabilities. Their parents were barred from leaving the country to seek medical care elsewhere, with the state effectively sentencing their children to death.
Today, Olivia continues to work on development, and she cannot sit up on her own or roll over yet. Doctors believe she will need blood transfusions for the rest of her life. But it’s all worth it for the Volley family.
“[I]t is challenging but Olivia is a wonderful baby. She’s so strong,” Volley said. “Everything life has thrown at her she’s fought with a smile on her face. She melts our hearts with her strength and determination and she is one feisty, cheeky and loveable little girl. Everyone says she’s a little fighter. She’s our little miracle. You can’t not love her.”
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