Premature Baby’s Journey: Family Fights for Hope and Life

When Sophie Neho was born at 24 weeks and 2 days gestation, she weighed only 580 grams (1 lb 4 oz), a size comparable to a small bag of sugar. Despite the grim prognosis from medical professionals, her parents, Octaviah Jackson and Reece Neho, have become fierce advocates for their daughter’s survival. Six-and-a-half months later, Sophie has multiplied her birth weight eightfold, yet her journey remains fraught with challenges.

Sophie entered the world on April 9, 2023, at Auckland City Hospital. Her early days were marked by a series of medical hurdles, including a condition known as necrotising enterocolitis (NEC), which requires surgical intervention. NEC primarily affects premature infants by inflaming intestinal tissue, potentially causing serious complications. Despite this setback, Sophie demonstrated remarkable resilience, astonishing her parents with her recovery.

Initially, Sophie faced significant health risks, including a heart condition identified on July 14. An echocardiogram revealed that she suffered from pulmonary vein stenosis (PVS), a rare condition that narrows the veins responsible for transporting blood from the lungs to the heart. Doctors informed her parents that only two other infants in New Zealand had been diagnosed with PVS and emphasized that Sophie was too small for treatment.

The couple’s determination led them to seek a second opinion, ultimately connecting with a cardiologist at Boston Children’s Hospital. This expert reviewed Sophie’s medical history and recommended potential treatment options. Jackson shared, “If we didn’t get the second opinion, Sophie wouldn’t be here.” Their efforts paid off when Sophie began treatment, which included ballooning her pulmonary veins on September 22 and addressing her patent ductus arteriosus (PDA), a condition that could lead to severe complications if left untreated.

Sophie’s parents have remained vigilant throughout her hospital stay, advocating for her care and well-being. Dr. Mike Shepherd, group director operations for Health New Zealand, expressed support for families seeking second opinions. “We are extremely supportive of whānau advocating for their children’s care,” he stated. “We recognize that while experiences may vary, we are all working toward the same goal – the very best outcomes for her and her family.”

As Sophie continues to show improvement, her parents have been able to engage more with her, even giving her a high-flow bath recently. They describe her as “funny, cheeky, strong, and determined,” noting her inquisitive nature. Jackson remarked, “She’s been really strong throughout this whole thing for such a little person.” The family remains hopeful that Sophie’s stoma will be reversed before she is discharged from the hospital.

Despite the emotional and financial strain resulting from their extended stay at Ronald McDonald House, the couple has found solace in each other and the connections they’ve made with fellow families in the Neonatal Intensive Care Unit (NICU). “Making friends in the NICU has helped a lot because it just makes you understand you’re not as alone as you think you are,” said Neho.

As Sophie weighs in at 4.69 kg, her family has learned invaluable lessons during this challenging journey. “We’ve learned not to give up. Just take things day by day, and keep fighting,” Jackson reflected. Their experience serves as a testament to the power of hope and advocacy in the face of adversity.

To support Sophie and her family, a fundraising page has been established at Givealittle.