Henry arrived at Great Ormond Street Hospital (GOSH) on 23 December 2017 and had surgery on his windpipe and his pulmonary artery reimplanted. Shevonne recalls how she, and her husband Ben, were given hope and strength at a difficult time by the teams at GOSH. “We were so worried and concerned for what lay ahead,” Shevonne says. “Then when we came in to see Henry early in the morning on Christmas Day, he had a stack of presents at the end of his bed. He was ventilated and sedated but Santa still delivered his toys to him. Having the gifts gave us something to talk to Henry about while he lay there fighting for his life. It gave us purpose and we knew he wasn’t missing out on Christmas.”
ONE STEP CLOSER TO HOME Four-year-old Henry spent his first two Christmases at GOSH. Now, as the animated star of GOSH Charity’s Christmas Appeal, his mum Shevonne tells Pioneer how the hospital, and support from the charity, helped get Henry one step closer to home. Henry was born at term but was transferred to a special care baby unit in Hull immediately, due to respiratory concerns and suspected gastric issues. He had a colostomy and two holes in his heart were discovered. After a few days his breathing became irregular, followed by a diagnosis of long segmented tracheal stenosis and left pulmonary artery sling. Henry’s windpipe (trachea) was 1.5mm wide; it should have been 6-8mm. His left pulmonary artery was also passing between the trachea and oesophagus, wrapping around his windpipe, and his trachea was made of complete cartilage rings, which wouldn’t have grown with him. 16 PIONEER
Following his surgery, Henry required 24 hours of Continuous Positive Airway Pressure (CPAP) ventilation for three months. Then, doctors attempted to wean him from constant ventilation at his regional hospital. During this time, he had a respiratory arrest. Leeds stabilised him on life support then he was transferred back to GOSH’s Cardiac Intensive Care Unit. With its specialist knowledge around his condition the team was able to move him from life support back to CPAP. Henry then went through a period of transitioning between life support and CPAP. “It was a worrying time and there were many occasions when we almost lost him,” Shevonne says. “In 2018 Henry was given airway stents [devices to keep the trachea open] as well as other gastric surgery and the formation of a gastrostomy [a feeding device directly connected to the stomach] as he couldn’t eat or drink orally while on CPAP. He was then given a
