A pioneering operation carried out in Sheffield has been life-changing for little May Ogden, four, who was born with a tiny stomach. Catherine Scott reports.
When she was one and half years old May Ogden was wearing clothes for three month old babies.
May’s stomach had not grown properly in the womb and as result everytime she tried to eat or drink anything she vomitted it up.
Four-year-old May’s stomach does not tolerate any feed or milk going into it. Instead, she retches and vomits.
Now pioneering surgery at the Sheffield Children’s Hospital means the little girl can get the nutrition she needs to thrive.
May’s persistent vomiting meant that she was not getting the nutrition she needed to grow.
She was first referred to a dietician at her local hospital in Doncaster who then referred her to a consultant in October 2017.
At the time aged 16 months old, May weighed just 7.2kg and was wearing clothes for children aged between three and six months.
For May’s mum Caroline Ogden it was heart breaking.
“May was struggling, she was not taking food by the mouth and was sick repeatedly. When other people would cough, May would throw up- it was that sudden. It was common for her to be sick three or four times a day.
“I often said we had to pack the kitchen sink every time we went out. We had to pack so many toiletries and blankets, because we just didn’t know how often it would happen.”
Concerned about her low weight, May was kept in hospital for two weeks. A scan revealed her tummy had not grown sufficiently and May had a nasogastric (NG) tube inserted to add medicines and feeds into the stomach.
“Even when May was unwell and screaming in pain, she’s always saying ‘don’t worry mummy, it will all be okay’. I often thought I’m the one who should be saying that,” says Caroline.
Shortly before her second birthday in July 2018, May was referred to Sheffield Children’s.
Within days, she had an operation to insert a feeding tube directly into the stomach to ensure that she could gain more weight and in January 2020, May had a pioneering procedure to resolve the problem.
The team at Sheffield Children’s performed a laparoscopic jejunostomy, which works by placing a flexible gastroscope into the mouth, through the stomach and into the small bowel.
A guidewire is then passed through the abdominal wall into the bowel, which is then used to correctly place a feeding tube. The innovative procedure avoids major open surgery and will in the future be aided by state-of-the-art specialist equipment, funded solely by charitable donations.
The Children’s Hospital Charity are funding three new Integrated Theatres to support the world class service at Sheffield Children’s. The specialist equipment will enable the integration of both flexible and rigid surgical telescopes, complete with a specialist HD camera system.
The new system will dramatically improve the capture of endoscopic images during surgery. The cameras will be four times the resolution of the existing equipment and the technological advancements are set to support surgical outcomes for generations to come.
Mr Richard Lindley, Consultant Paediatric Surgeon at Sheffield Children’s explains: “Currently when we perform a procedure like May’s, the gastroenterologist and the surgeon use different sets of monitors.
“With the integrated theatre system, everyone can see what the other operator can see, and the level of detail and clarity it provides will make these operations quicker and safer. For example, we will be able to better avoid blood vessels and reduce bleeding as a result.”
The department of Gastroenterological and Hepatological Medicine at Sheffield Children’s care for patients up to 19 years old who are referred from across the UK and internationally.
As a premier endoscopy unit for children worldwide, Sheffield Children’s has established an international reputation in paediatric key-hole surgery.
The new theatres will also enable operations to be broadcast internationally, helping surgeons across the world learn from the world-class experts in Sheffield.
Mr Lindley continued: “We have already demonstrated this procedure live at an international conference and this new equipment will allow us to continue to provide and develop the world-leading service we have for these procedures.
“I would like to personally thank everyone who has contributed to this equipment as they are helping the children who we look after to have the best possible surgical outcomes, reducing the risk to their health, their pain and their stay in hospital.”
For May, the procedure has been life changing. It has allowed her to receive the nutrition she needs, gain weight and control her vomiting, ensuring she can leave the house without worrying and regularly complete full days at school for the first time.
Mum Caroline added: “It’s made the world of difference. May’s doing really well, gaining weight and height. She’s been so happy and smiley, she’s got such an infectious grin.
“I would walk from Doncaster to Sheffield to continue her care under Mr Lindley and the team at Sheffield Children’s Hospital. They have been incredible and even throughout lockdown their support has been second to none.”
To make a donation to The Children’s Hospital Charity’s work supporting Sheffield Children’s, visit: www.tchc.org.uk