The Whole Story

Ali Howell and her family

Finance expert Ali Howell and speech pathologist Emily Lively came together through Ali’s daughter, Saskia, and her tube-weaning journey. Now, the duo are creating nutritionally formulated blended feeds through their venture, WHOLE enteral nourishment.

Ali, you’re a mother of three - eight-year-old Saskia, Bowie, 6, and two-year-old Oscar. How did tube-feeding come into your life

Saskia – we call her Kiki – has Kabuki syndrome. When she was born, she was tube-fed from day one, and stayed on nasogastric tubes for her first five months. She had hypoglycaemia, which was diagnosed as hyperinsulinism, which means she had really low blood sugar at birth. She also has hypotonia – so low muscle tone – and also coordination issues that are associated with that. These things were physically preventing her from being able to feed. 

What eventuated was an incredibly severe aversion to oral feeding, which often happens for children with feeding difficulties, because you're trying to get them to eat and maybe not doing it the right way. It’s also just terrifying for them, because they feel like they're choking, which they kind of are. 

It got to the point where you’d touch a bottle or a spoon to her lip and she’d vomit straight away. She had incredibly severe GORD [gastro-oesophageal reflux disease] as well. So she was just vomiting all the time, regardless. At five months old she got her PEG put in, which was life changing. 

I know that, just like us, you started with commercial formula and switched to blends. How did you discover blended feeds?

My husband Anthony’s role – especially in his early days – was going down rabbit holes of internet research. The gunk that we had to feed her just didn’t feel right. We were trying to explore other options and stumbled across the blenderised feeding Facebook groups and the products that were available internationally, and thought, right, people are thinking what we are thinking and there are other options.

We have a bit of an attitude that if something feels right, even if one doctor tells us otherwise, we would still happily explore it. So we had that going for us. We also had a dietitian who did the work to analyse what we were proposing and gave us some advice, so that provided a level of comfort. 

When did Kiki transition from PEG to oral feeding?

When Kiki was around two we went and saw speech pathologist Emily Lively and that was the only real traction we got with actual oral feeding. And then it was probably a full six to 12 months after that that we completely cut out all the tube-feeds, so up until about three. It was a long journey - and by far the toughest we’ve been through.

Kiki has had open heart surgery and horrible drugs for hyperinsulinism - she’s got a million medical things going on, all the therapies, everything - but nothing compared to the feeding. It was just so hard and traumatic for all of us. I literally could not feed my child.

I’m learning that Emily Lively, of Adelaide’s Lively Eaters feeding clinic, has rockstar status in the paediatric feeding space. How did you come to connect with her? 

I had heard about Emily and her intensive feeding therapy. We reached out to her and had a couple of Skype calls, and she said that Kiki would be a really good candidate because at that stage, she was a bit older. Those coordination issues and the hypotonia weakness could be overcome. It was now mainly about her food aversion.

The week-long Intensive Tube Weaning Program seemed like a really good option for Kiki, and Emily agreed. Emily’s based in Adelaide and we’re in Sydney, so we travelled down for the intensive soon after Kiki’s heart surgery, when Bowie was only a few months old. It was a pretty brutal week, but it was the start of Kiki eating, which was so amazing for us.

What was it about Emily’s program that changed things for Kiki? 

Emily set up an environment where Kiki felt safe. The program is run in a hospital, but it doesn't feel like a hospital. You have all that medical support around you should you need it. It’s just about sitting down to five meals a day and normalising that. It’s not revolutionary at all, really, but it’s just not something that you do at home, right? Unless you lock your family away and bring in a paediatrician, Emily and a bunch of therapists five times a day, that’s not going to happen. 

It was just this gradual process of really dealing with her aversion in a safe space. And slowly - very, very slowly -  a lick turns into something else. By the end of the week Kiki wasn’t actually eating, she was just more comfortable trying, and we continued the work when we got home. That was early December. By Christmas, Kiki was sitting on my uncle’s lap, wolfing down a wheel of brie. 

Now she wants to be a chef and food is her favourite thing. She’s got such a healthy relationship with it and is the most adventurous out of all our kids in trying food. It’s been an amazing, complete turnaround.

How wonderful! What’s Kiki’s favourite food to make? 

Japanese food like sushi and sashimi. She makes gyozas with her dad.

So now that Kiki is eating orally, why was WHOLE - a business that makes blended tube-feeds from wholefoods - something you wanted to create? 

When Kiki was having blends we were getting this stuff in from the States at the most incredible costs, and just thought, why isn’t there something available here in Australia? I didn’t want to let it go because it just felt so important. It’s still a passion for me, despite not needing it anymore. 

Anthony and I started this over three years ago and in those early days we thought, who can we go to? We understood the need for this kind of product, but we wanted other people around us that had more of a professional standpoint. I sent Emily an email saying, “Hey, remember us? This is what we’re thinking. Could you consult us on this?” And she responded with: “I would like to do more than consult. My husband, Gary, and I will be your business partners.” So it went from there. 

What advice do you have for other parents who are trying to transition their kid from tube to oral feeding?

What worked for us was normalising it. We’re just talking about food and meals here. What do you do with your other children if you have them? You don't set up this weird scene of toys. You sit down together as a family and you have a meal. I think it’s so easy to forget that. It’s so easy, because you're in this medical space, to make this feeding process a medical one as well. 

Then you just need a whole lot of patience. I used to hate when other Kabuki parents we’ve met along the way would say to me, “The earliest years are the hardest and it will get better”. I wanted it to get better there and then. But I needed to be patient. Things do get a little bit easier and you get a little bit more used to it - and sometimes a little bit of magic happens.

Emily Lively and her family

Some expert guidance from speech pathologist and WHOLE co-founder, Emily Lively

What’s the secret of your Intensive Tube Weaning Program? Why does it work?

It’s no secret. To teach children to eat and drink you need to teach parents how to facilitate this within everyday mealtimes. Many parents have lost the confidence to make decisions for their baby or child and lost their confidence to trust their natural instincts. 

My philosophy is grounded in the belief that learning to eat is a skill we all teach our children from birth and that all children deserve the opportunity to learn to do so in whatever capacity they are able. Babies don’t just know how to suck, swallow, breathe or eat solids. These skills are taught by parents over the first 12 to 18 months of a child's life. Much like learning to crawl, walk and talk, learning to eat requires practice, trust, enjoyment, experience and needs to be facilitated by adults. 

This learning is interrupted for tube-fed children for a variety of reasons and my team at Lively Eaters and myself are honoured to be able to teach parents and “give them back” this role. In doing so, we also allow children the time to learn to respond to their newly discovered appetite on their terms and within their control - no forcing, bribing or cajoling. This takes time and the ability for adults to trust in the children - something that the children have taught me over the last 12 years of running the program. 

What tends to be the biggest challenge in transitioning a child from tube to oral feeding? 

Parents! Unfortunately it’s the parents who have struggled just as much as their children with tube-feeding and medical interventions. The overhanging threat of “not gaining enough weight”, the anticipation of “the next vomit” and the trauma from watching a nasogastric tube be inserted while their baby is held down all impact on a parents’ ability to be able to let go and hand the reins back to their child. 

In addition, many parents are immersed in a ‘medical model’ of tube-feeding and weight monitoring for many months and sometimes years. Being able to facilitate within parents the confidence to let their child be the boss of their tummy can be scary for parents but so rewarding for us as therapists. If we can work together with medical and allied health practitioners in the neonatal and infant stages to allow tube-feeding to follow a more typical hunger cycle and mealtime experience, we can empower parents from the start to read and respect their babies cues, rather than following a prescribed regime. 

Why is WHOLE enteral nourishment something that you wanted to make, and what impact do you hope this product will have on Australia's tube-feeding community?

For the last 10 years I have worked with our dietitians at Lively Eaters to support parents to make real food for their tube-fed children as this is what our bodies are designed to thrive on. This came out of witnessing first-hand the constant vomiting, slow growth, runny stools and lack of energy in some of our tube-dependent children. It also came from the grief expressed by parents at their loss of not being able to cook for and nurture their child with homemade foods. 

I have seen the positive impact on our tube-fed children when they transitioned to homemade blends. Their skin shone with colour, their hair glistened, the vomiting improved, their tummies and bowel began to learn to process and digest the foods they would be learning to eat, they began putting on weight and parents felt like they were fulfilling one of their roles as a parent - to nourish their child's development through wholesome foods. 

The dedication, persistence and passion the WHOLE team has put into developing our shelf-stable, nutrient-rich and certified meal replacement that meets FSANZ [food standards] is testimony to the opportunities we would like to provide to the tube-fed community - both children and adults alike - as we all know that some nights we just can't be bothered cooking!

What words of advice do you have for a parent whose child is new to tube-feeding, and feeling overwhelmed and anxious about adjusting to this new way of feeding their kid?

Tube-feeding is supplementary. It should be in addition to all the usual mealtime experiences you would offer an orally-fed baby, child or adult. It should never be instead of. Yes, there might be lines, syringes, pumps, giving sets and medications involved, but this shouldn’t stop you from having family mealtimes as you would if your child was eating. 

Never lose sight of the fact that your baby, child or young person has the ability to let you know when they’ve had enough to eat. Respecting their appetite and mealtime cues early on will form the basis of a trusting feeding relationship for the years ahead.