When single mother Sarah Thomas could not find the product she needed for her young son, who feeds through a tube, she decided to create a commercial blended food product herself.
Ms Thomas’s twin boys, Lewis and Cohan, are now 13, but 10 years ago their lives changed dramatically.
“Lewis had a stroke when he was three, and we were on and off tube feeding for a period of time,” Ms Thomas told ABC Radio Brisbane.
The stroke later made it harder for Lewis to swallow, and he started on enteral foods full-time.
“Four years ago, he permanently had a tube inserted into his tummy, and I was looking for options for foods for him,” Ms Thomas said.
For years, she tried to make Lewis’s food herself.
“I blended a lot at home myself and spent hours and hours trying to get him good, real, nutritious food instead of formulas,” Ms Thomas said.
“I always knew that I didn’t want to give him the hospital-based formulas because they were incredibly high in sugar and not how our family eats.
“Don’t get me wrong, we’re not perfect, but we don’t consume a full diet of sugar.”
A spokesperson from the Queensland Children’s Hospital (QCH) said hospitals used a range of commercial enteral tube feeds with different compositions depending on an individual child’s age, medical condition, therapeutic and nutritional requirements.
For Sarah Thomas, making all the food from scratch was inefficient and impractical for school and travel and importing a product was not an option.
“There was nothing available in Australia, which was a bit dumbfounding,” she said.
The Queensland Children’s Hospital spokesperson warned against the risks of homemade blends, which could damage or block tubes or lack sufficient nutrients, recommending people work alongside health care providers.
In collaboration with dietitians and food technologists, Ms Thomas launched a commercially available product called Wholesome Blends.
“It’s been an absolute battle of passion, but we’re finally there.
“We now distribute all across Australia and are now looking to distribute to New Zealand as well.”
Lewis and Cohan have played an active role in the product’s development as well.
“These two have become experts of nutrition and label reading and designing of pouches,” Ms Thomas said.
“The boys have been involved 100 per cent of the way, and I’ve run everything past them.”
Dietitian Emma Blank worked alongside Ms Thomas to get her idea off the ground.
“We’re moving into a space that is very much unknown in Australia, but other countries have been doing this for a long time, and we’re learning along the way,” Ms Blank said.
She said adequate funding would be needed to undertake research.
“Sarah’s a trailblazer, and I’m doing my very best in my profession to act in accordance with all of my knowledge and my code of ethics and evidence-based practice, to give the best possible practical advice that we can until the research catches up,” Ms Blank said.
“But in the first instance, it’s consumer choice and patient advocacy, and, I guess, the call out is for health professionals to think from a very family-centred perspective.”
But these blends are not always able to be used in instances like hospital stays.
The QCH spokesperson said the hospital would always work with families to find a suitable alternative when safe and appropriate to do so.
“If a family asks to use a commercial enteral product not provided by the Queensland Children’s Hospital, our dietitians will assess the product for suitability to ensure it complies with therapeutic and safety standards and meets the nutritional requirements of the child,” the spokesperson said.
“All enteral feeds administered by Queensland Health public hospitals are approved by the Queensland Health Medicines Advisory Committee and included on the official List of Approved Medicines (LAM).
“Medicines not on the LAM can be accessed through an Individual Patient Approval process managed by local Hospital and Health Services.”
Giving people a choice
Ms Thomas said most people didn’t eat the same meal every day and she didn’t expect her son Lewis to do so.
“He might not put food in his mouth, but it’s going into his tummy [and] he’s still having that really lovely environment around a dinner table and being included in our social interactions with the family.”
It is something that Ms Blank said had resonated with the other families using the product.
“All of the families feedback to me [is] that this is one of the few areas that they can have some sense of control over their child’s development and activities of daily living and be able to normalise that,” Ms Blank said.
The QCH spokesperson encouraged people to discuss alternative enteral food products with their dietitian, who could determine if the product met the patient’s nutritional requirements.
“If purchasing products from internet suppliers, always ensure that full nutrient composition data is available for the product, including macro and micronutrients as well as trace elements, and that the company has an accredited food safety program,” the spokesperson said.
“For example, accreditation through the Brisbane City Council food safety program.”