Emma Davis with daughter Nina, 5
Children with intellectual disability who underwent gastrostomy – a feeding tube placed into the stomach – had better overall health and fewer hospitalisations for all causes except acute respiratory illnesses, research led by The Kids Research Institute Australia has found.
Associate Professor Jenny Downs, Head of Child Disability Health and Wellbeing at The Kids, led a study which used linked data to follow the progress of hundreds of children from Western Australia and New South Wales who were born with intellectual disability between 1983 and 2010 and who later underwent gastrostomy.
The procedure, which has been in use since the early 1980s but has become more common since 2000, bypasses the need for oral ingestion of food, liquid and medication – improving the level of nutrition delivered and helping to avoid feeding-related health problems.
“Children with severe disability can have a lot of trouble chewing food and swallowing food and liquid effectively,” Dr Downs said.
“Feeding can take a long time, leading to frustration for children and families, but difficulties feeding can also cause health issues such as aspiration and can mean children don’t eat enough and don’t get their medicines.
“Gastrostomy, while not for everyone, changes a lot of that.”
The research, published in this month’s edition of the Journal of Pediatrics, found children who underwent gastrostomy experienced about a 30 per cent drop in hospitalisations for all causes five years post-procedure. Epilepsy-related admissions dropped by approximately 50 per cent at the five year mark.
Dr Downs said the marked drop in epilepsy-related hospitalisations was likely due to the fact that medications were more consistently delivered by gastrostomy.
“Epilepsy is a common illness in children with severe disability, and if there are feeding difficulties it can be hard to take the required medicines,” she said.
Study collaborator and Head of the Department of Respiratory and Sleep Medicine at Perth Children’s Hospital, Associate Professor Andrew Wilson, said the one area where there was no improvement was hospitalisation for respiratory illnesses.
“That’s possibly because even if you remove the oral ingestion of food and liquid, children with severe disability may still struggle with swallowing their own saliva or experience reflux, which can then lead to respiratory issues,” Dr Wilson said.
Nevertheless, Dr Downs said the study suggested the procedure had great potential to improve overall health and quality of life for children and families.
“It’s not a not a total panacea and may not be for everyone, particularly for families who want to avoid more medicalisation and keep the pleasures of eating that regular feeding offers,” Dr Downs said.
“It’s not a black and white decision and calls for very careful and detailed discussions between clinicians and families. Ultimately parents need to do what is best for their family. However, for those who do choose this route, we’ve seen that carefully managed feeding via gastrostomy can have all sorts of benefits for children with severe disability.
“Gastrostomy can mean better health and nutrition, opportunity for growth, more consistent and accurate delivery of medications, more independence in being able to feed away from home, and less frustration for children and families as a result of long and difficult feeding times.
“The difference this can make to general health, mental health and quality of life is important.”
The paper, Risk of Hospitalizations Following Gastrostomy in Children with Intellectual Disability, can be read here.
The study, supported by the National Health and Medical Research Council, was carried out in collaboration with researchers and clinicians from the Perth Children’s Hospital, the University of New South Wales, and The University of Western Australia.
Gastrostomy a godsend for five-year-old Nina
Born with a rare but still undiagnosed syndrome that has led to significant disability and developmental delay, Nina Davis was nearly three years of age before her mum, Emma, discovered almost by accident that she was silently aspirating during mealtimes.
A serendipitous appointment involving Nina in a swallow study at Perth Children’s Hospital – one of countless medical appointments the Wembley family attend every year – revealed the problem.
“It came as an absolute surprise because I hadn’t realised that was the case,” Emma says. “Nina is an absolute angel and is one of those kids that rarely complains.
“Mealtimes had been getting longer and more frustrating and she was coughing a lot during each meal, but I didn’t know that she was actually aspirating. Although she has low muscle tone she still has a good cough so would eventually just cough it out. But once we took part in the study and saw the X-ray we could actually see the food going down the trachea.
“A speech pathologist suggested straight away that we suspend all oral feeding and start delivering all nutrition via a nasogastric tube.”
Nine months later Nina underwent gastrostomy – a procedure allowing her to have nutrition delivered via a tube to the stomach.
While it hasn’t been all smooth sailing, with Nina still prone to reflux and needing to take antibiotics to guard against respiratory infection, Emma says the change has provided significant relief – removing frustration around mealtimes, giving the family confidence Nina is getting the nutrition she needs, and allowing Emma to attend more easily both to Nina, now 5, and her two-year-old sister.
“Because we don’t want her to be completely different, Nina has half her calories overnight and this means she can have her three meals a day with the rest of the family. Everyone’s having mealtime together, just in a different way,” Emma says.
“There’s been some trial and error about volume and she still has reflux, but it’s really brought down the time that meals were taking. Before, they were easily taking 45 minutes to an hour – which was frustrating for me and it had got frustrating for Nina, too. Now, we’re done and dusted in 30 minutes.”
The change has also allowed Emma to deliver Nina’s medication more effectively.
“It’s made life so much easier because she’s on multiple medicines – more than 40mls every morning. I can’t even fathom now trying to make her swallow that,” she says.
“Having the gastrostomy has been an absolute godsend, both for those practical sorts of reasons but also from the point of view of Nina’s best interests and health. It’s definitely been a step in the right direction.”