COVER STORY

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. 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.”

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

tracheostomy [a breathing tube fed through a hole in the throat] and ventilator to secure his airway and prevent repeat intubations.”

Once Henry came out of intensive care, he transferred to Kangaroo Ward, where they spent his second Christmas. “I went to town decorating his bay; it was full of twinkly lights, cards and balloons,” Shevonne says. “We also stayed in family accommodation - funded by Great Ormond Street Hospital Children’s Charity (GOSH Charity) - for two weeks over Christmas, which meant my husband and I could live as a family with Henry for the first time since he was born. It also allowed for some of our family and friends to visit over the Christmas period. We had a wonderful Christmas in the flat and will forever be grateful for the time there and the confidence it gave us to be able to care for our little Henry bear.”

Henry came into the hospital twice a day over the Christmas period for physio. Shevonne remembers how GOSH staff made the wards as festive and special as possible. “They dressed up on Christmas Day and there were decorations wherever you turned. It was heart-warming to know donations had been made to go towards giving seriously ill children the Christmas they deserve.”

After his second Christmas at GOSH, the long-term ventilation team helped prepare the family for Henry’s transition home.

“We were responsible for all of his care, medications, ventilation and equipment. It was nerve-wracking, but also reassuring to know if we could do this across the road from the hospital, we could do this at home.”

Henry now

“Henry is a kind, happy and gentle child. He loves books, playing outdoors with water, riding his bike and scooter and going to his grandad’s farm to ride on the tractor with him. He loves acting out parts of his favourite stories or parts of a movie he likes. He’s a real character, often making us laugh and is a very good big brother to his baby brother George.

“Henry still requires 24-hour ventilation via his tracheostomy, however he has a voice now and can talk, which we never knew if he’d be able to do, due to him having a paralysed vocal cord post-surgery at five weeks old. Henry used Makaton sign language to communicate when he had no voice and now uses Makaton to support his speech. His voice is getting stronger and he is making himself understood.”

Henry now has six monthly reviews at GOSH as well as regular contact to manage his respiratory care at home and make any adjustments to ventilation or treatments.

“Everyone at GOSH is so supportive and we trust in their decision making about Henry’s care as they have got him this far. Everything from GOSH has been excellent.”

CHRISTMAS APPEAL

Every child should have the chance to be at home with their families on Christmas Day. Dedicated teams at GOSH work around the clock to find cures and treatments to ensure seriously ill children have the best chance of getting home to their families.

By supporting GOSH Charity this Christmas you’ll be helping fund vital resources that GOSH needs to get seriously ill children one step closer to home. Resources such as state-of-the-art medical technology; pioneering research programmes into treatments and cures for rare conditions; patient and family support services; and new child-focused environments that help children feel safe and calm.

This festive season, look out for GOSH Charity’s Christmas Appeal. It will be spearheaded by an animation that highlights how donations can help bring children, like Henry, who stars in animated form (pictured above), one step closer to home.

Thank you for supporting GOSH Charity this Christmas. Visit gosh.org/xmas or call 0330 0021514 to make a donation.