Dream Team

With collaborative care crowned the best approach for paediatric feeding issues, you’ll want to surround your kid with a fantasy league of specialists. Here’s one we prepared earlier.

Their multidisciplinary approach – a combination of dietetics, speech and occupational therapy, and psychology – draws a complex crowd to Kids Feeding Specialists in Sydney. Poised to tackle a vast spectrum of feeding challenges, once a family is in their care, this team pays as much attention to their emotional state as their nutrition, feeding skills and development.

“I just felt there wasn’t a safe space in the private health sector for children with complex feeding difficulties – and families weren’t getting the specialist multidisciplinary support they required at such a stressful time in their lives,” says founder Simone Wright.

Feeding difficulties are common in children – all the more so for children with disability and infants born prematurely.

A senior paediatric dietitian with more than two decades of clinical experience, Simone points out that when it comes to paediatric feeding disorders (PFDs), a collaborative approach is essential.

“That’s the gold-standard, best model of care,” says Simone, while literature examining treatment for PFDs very much has her back. The Kids Feeding Specialists team are regularly involved in training medical students and also offer clinical supervision, both in the clinic environment and online.

“Our space arose from my passion to put together an experienced multidisciplinary team to support children – and we now have an amazing team of clinicians with similar passions and interests,” says Simone.

That team works together in a space that is very intentionally not situated in a hospital.

“We break that standard, ‘clinical’ barrier,” says Dr Amanda Khamis, a senior speech pathologist at Kids Feeding Specialists. “A lot of the families that we see have been elsewhere, so we hear about their experiences. You don’t want a sterile- feeling, clinical environment – and we definitely don’t provide that.”

Claire Davidson, another senior paediatric dietitian on the team, loves not having to rush from one family to another.

“There’s so much pressure and stress on parents and when their kids have eating difficulties, those parents are looking around comparing,” says Claire. “So I love having the time to say, ‘Every child is different. We don’t have to aim for a so-called normal diet. Let’s work with what your child can do and look at their nutrition within what they can do’.”

Senior occupational therapist Mearelle Kachwalla says that families are relieved to have found the team’s support.

“A mother we’re working with broke down in tears and I thought, ‘oh no’, I thought I was being really gentle! But she said, ‘these are tears of relief because for 10 years I thought I was doing something wrong’,” says Mearelle.

“Families carry so much guilt. We’re here with empathy and really allow families to feel heard, understood and supported, which means we get the whole picture.”

Five minutes with Kids Feeding Specialists’ clinical psychologist, Monica Sekowski

A really important part of this whole feeding journey is getting the right diagnosis. It’s not enough to make the observation that “this child is really anxious about choking and its getting in the way of their eating” when the anxiety is so extreme it impacts their functioning, and prevents them from doing the work they need to do with their feeding therapist.

If we’re seeing an anxiety-based mental health condition, we need to diagnose it so a child can receive the correct treatment. And so people can understand that this is not just “picky eating”, this rigidity is real and it’s very hard to shift.

One thing I really like to do is see the parent or parents in isolation, for their own sessions, so I can help them manage whatever is going on for them – whether it be grief, anxiety or stress. Just upskilling on how to manage those big emotions so they don’t show up as much in the feeding situation.

All the research we have tells us that negative emotions around food and eating is one of the biggest contributors to food refusal. So we need to manage anxiety – both in parents and in children – to create good outcomes.

We’re able to sit with a family’s really heavy emotions, rather than trying to push them away and fix them. It’s really important that a family feels heard, listened to and validated before they can move forward and do the really hard stuff they need to do. And this is really hard, anxiety-provoking stuff.

What families are saying

Belle’s mum, Emily Taylor

Belle was born at 27 weeks and was on oxygen for six months – and with all of the tubes, suction and general care in hospital, an oral aversion was created. She would not take to breastfeeding or bottle feeding and had not eaten anything solid until we met with Kids Feeding Specialists. We see the whole team once a month, with ongoing weekly support from Amanda and Simone as needed.

During our first meeting, Simone said “we want to support the parents as much as we support the child”. That meant so much to me because, for months, I felt like no one was listening to me in the hospital setting. Simone suggested changes to Belle’s enteral feeding regime and immediately, her frequent daily vomiting ceased. Belle has now been weaned from her tube feeding and her love for eating is growing every day.

Charlotte’s mum, Sarah Matthews

You don’t want to feel like your child is just another patient, just another number. My goal as a parent is to surround Charlotte with a team of superstars who are genuinely invested in making her life better. And as soon as we met Simone, she was clearly one of those people. Her team is actually interested in and genuinely cares about complex children.

Charlotte was born with a rare genetic condition called Cockayne syndrome and requires blended tube feeds to optimise her growth. It would be easy to go into Charlotte’s sessions and focus entirely on her tube- feeding and growth, but Kids Feeding Specialists is more holistic than that. They make the space and time to say, “hey, how are you going? How are you dealing with this at the moment?” It’s about the family as a whole as opposed to just the professional piece around Charlotte’s diet.

To families who are new to this experience, I’d say take the time to find those superstars. Be ruthless. Move on, if you need to, from therapists that aren’t there to support you in the way that you need. And once you find that A-team, hold on to them for dear life!

Alysia’s mum, Anna Dallianis

Alysia has Rett syndrome and has been PEG-fed since she was three years old. She was also eating orally up to the age of 13, when she had her spinal fusion. Since then she’s been fully tube-fed and was having problems tolerating her formula. Alysia started to vomit after each feed and was crying and very unsettled both day and night, so I contacted the Kids Feeding Specialists team and Simone advised us to start blended foods.

We tried breakfast first and within two days, the vomiting stopped. We then started on blends for dinner and it’s been fantastic. Alysia has been so happy. She loves the Greek food I cook!

This story was made in partnership with Kids Feeding Specialists. For more information about their multidisciplinary offering and to connect with the team, head to their website.