Parents Have Lived in Hospital for 17 Months Since Son’s Birth

For 17 months, Teena Thomas and Sebastian Paul have remained by their son Gabriel Sebastian’s side since his birth with a rare genetic condition. Due to his critical health, he has continuously resided in the Edinburgh hospital where he was born. Consequently, his parents have not returned to their own home during this period. The couple, originally from Kerala, India, where a father’s first name serves as a surname, now occupy a dedicated room within the hospital. They are anticipating their second Christmas spent at the facility. Gabriel’s health complications were initially identified during Teena’s five-month pregnancy scan. The sight of her baby boy on the screen caused a sudden silence, indicating an issue. The couple received news that his bones “weren’t really there,” his spine was minimally developed, and his limbs were excessively short, making survival improbable. They were advised to consider terminating the pregnancy. Teena conveyed to BBC Scotland News their profound fear. She stated, “Sleep became impossible.” She questioned, “How do you even begin to make that kind of decision?” She described feeling him “moving so strongly” while awake, “like he was saying, ‘I want to come into the world, Mama.'” She concluded, “How could we not fight for him?” Diagnostic tests confirmed their baby had Spondyloepimetaphyseal dysplasia, a genetic condition of such rarity that its long-term impact on his life was unforeseeable. Predictions included short stature, potential facial abnormalities, possibly brittle bones, and a 50% risk of being stillborn. Teena, 32, remarked, “We prepared for the worst but clung to hope.” She added, “One scan showed him sucking his thumb. Surely that meant his bones had some strength? We dared to believe.” The parents purchased a Moses basket and adorned his room, anticipating a hospital stay of merely five days. Gabriel was delivered via cesarean section on 2 June 2023 and has remained at the Royal Hospital for Children and Young People in Edinburgh continuously since that date. Teena recounted, “They didn’t put him on my chest, didn’t even wait to clean him. I got to touch his tiny finger – then they scooped him up and ran.” Gabriel was subsequently transferred to intensive care and promptly intubated. The family was provided with a room in the hospital’s parents’ accommodation, managed by Ronald McDonald House Charities. This facility comprises 25 rooms on the top floor of the children’s hospital, offering families complimentary stays for any required duration. Teena stated, “This was 17 months ago. We’ve been here ever since.” Gabriel underwent numerous tests, X-rays, and scans. His chest size was insufficient, his ribs were underdeveloped, and he could not breathe without assistance. At the age of two months, he underwent his initial major surgery, a tracheostomy, which involved creating an opening in his windpipe to establish an alternative breathing passage. However, this procedure introduced new anxieties. Excessive movement now posed a risk of the tube becoming obstructed, thereby blocking his airway. Teena described, “The first time this happened was horrifying.” She continued, “One minute he was fine, the next his heart rate plummeted, he turned blue and went cold in my arms.” For several months, such emergencies occurred almost daily, prompting the couple to inquire with doctors about the possibility of saving their child, to which no definitive answer could be provided. Teena remarked, “I’ve never heard his voice because you need air to pass through the voice box but the hole in his neck for the ventilator is below that.” She added, “It makes me cry when I see him crying silently.” Concurrently, Teena has resumed her profession as a scientist, and Sebastian has maintained his career as an engineer. They have coordinated their work schedules to ensure continuous parental presence with Gabriel. Amidst these challenges, delicate instances of joy emerge. On the day following his first birthday, after 366 days of continuous hospitalization, Gabriel experienced sunlight on his face for the first time. He had adapted to his portable ventilator, enabling him to venture outdoors. Teena commented, “Gabriel’s smile is the most powerful thing.” She elaborated, “Through every invasive operation, every painful procedure, every heart-wrenching emergency, he comes back smiling. And that keeps us going.” She also credited, “That, and the extraordinary, superhuman NHS teams at the hospital.” The Roman Catholic parents have received notification that Gabriel will not be discharged home for Christmas. Instead, the family has been invited to activate the Christmas lights at the hospital later this month. Pippa Johnston, deputy CEO at Edinburgh Children’s Hospital Charity, stated, “Gabriel and his family are inspirational and have shown so much strength and resilience through an unimaginably difficult time.” She added, “While many people will head home to be with family this Christmas, the sad reality is that many children like Gabriel, and their families, will spend it in hospital instead. Together with the NHS, we work hard to bring the sparkle to make sure families like Gabriel’s don’t miss out over the festive season.” Gabriel’s prognosis remains unclear. Medical professionals are unsure if he will ever breathe independently, speak, or eat. A recent finding indicates his brain is shrinking. Last Christmas, his condition was too critical for it to be anything other than “another scary day.” Teena mentioned that this year, the Edinburgh Children’s Hospital Charity is making every effort to ensure a memorable Christmas for him.