After giving delivery, the newborn infant turned blue, shattering the mother’s world
Sarah Lincoln, a 37-year-old mother, experienced a life-changing event when her newborn son, Shaemus, developed severe health complications just hours after his birth on May 6, 2017. Initially, everything seemed normal during her pregnancy, but 12 hours after Shaemus was born, he began to struggle to breathe and turned blue, prompting urgent medical attention.
Specialists from Alder Hey Children’s Hospital diagnosed Shaemus with Jeune’s syndrome, a rare genetic condition causing chest wall deformity and respiratory difficulties due to a small chest cage. This syndrome, with only about 600 cases in the UK, can lead to severe breathing issues without treatment.
Living in Oswaldtwistle, Lancashire, Sarah, and her partner Kieran Flood, aged 42, faced the daunting news that most children with Jeune’s syndrome don’t survive past two years due to limited rib capacity. In their search for solutions, they were relieved to learn from a thoracic surgeon that rib expansion surgery wasn’t immediately necessary for Shaemus, as he was managing with gradually reduced oxygen support, reported Liverpool Echo.
However, Shaemus’ health challenges continued. At 14 months old, he was diagnosed with stage five kidney failure, compounding the family’s distress. He underwent a procedure to receive a peritoneal dialysis catheter, marking the beginning of a lengthy treatment process.
Despite successful surgery, Shaemus faced further health issues, including severe vomiting, weight loss, frequent chest infections, and later, peritonitis. This infection, caused by the catheter, necessitated its removal, leading to daily four-hour treatment sessions at Alder Hey until a transplant date was set.
Shaemus, also diagnosed with Caroli Disease, a rare liver condition, endured multiple health scares, including pancreatitis requiring intensive care treatment. In January 2024, a turning point arrived when Kieran, found to be a suitable donor, underwent surgery to donate part of his kidney to Shaemus. The transplant, lasting over eight hours, marked a significant step towards recovery for both father and son.
The family, now looking forward to a life without dialysis, has raised significant funds for Alder Hey Ronald McDonald House, the hospital’s renal unit, and the National Kidney Federation. A GoFundMe page set up by a family friend aims to fund a holiday for the family to celebrate Shaemus’ recovery.
Through their journey, Sarah has learned to cherish each day, focusing on the present and making precious memories. Despite the challenges, the family’s resilience and community support have lightened their burden, offering hope and strength.