A photo series by Kate Disher-Quill in collaboration with SUCCEED Child Feeding Alliance (Supporting Children with Complex Feeding Difficulties)

For a multitude of reasons, whether short term or long term, there are babies, children and adults whose bodies need to access their food and nutrients via a tube. Sometimes via the nose or directly inserted into the stomach or bowel. The simple fact is that these tubes allow people to access food and nutrients which keep them alive. But while that may be simple, this daily reality can often be fraught with isolation, shame and fear.

In working with the SUCCEED Child Feeding Alliance, I was invited into the homes of seven families with ‘tubie kids’. I spoke at length with the mothers and was struck by the common threads which embodied their stories. The isolation they felt in the initial weeks and months of tube feeding their kids, with no social support, they were often too afraid to leave the home. The shame and fear they felt when taking their child out into the world - how would people react when they saw their beautiful baby with a tube attached to their face? Would people stare in disgust if they fed their child in public?

The lack of support given to these families and lack of conversation around these experiences is the very reason why SUCCEED exists. From a young age society conditions us to hide our weaknesses or our differences. It is often done as a form of self-protection. We fear rejection. We fear the unknown. But it is through sharing these experiences and these differences that we find strength, community and a sense of wellbeing. This series of portraits aims to share the challenges and vulnerabilities of these mothers while celebrating the courage and resilience that I witnessed. It also gives a voice to these children, who just like any other child, need to be nurtured, loved and accepted.

Kate Disher-Quill

Kellie + Ollie

“I wish that someone had told me to keep processing our new normal, that a feeding tube is just another form of eating that society hasn't yet normalised. You’re not alone, there are so many people of all ages with different types of feeding tubes for different reasons and they are a life support that should be celebrated.”

Vyvy + Diaz

“If you’re in the situation of having a feeding tube child, be confident that you can do this. Keep your head up, don’t despair. As overwhelming as the new information on how to tube feed safely is, it’s definitely doable and you can get through this.”

Irene + Connor

“It's really important to me that Connor’s part of our meal times. The tube is essential for his nutrition, but I also want him to learn to eat and swallow, to taste flavors and experience different textures in his mouth. He's always up at the table playing with his food, being part of the family.”

Anna + Emily

“Initially I felt worried and sometimes too overwhelmed to go out. Not only was I concerned for Emily’s health because she was premature, but it felt like such an ordeal having to take all the medical equipment with me as well as everyone staring at us if I had to feed her. However after months of not leaving the house, I decided that a simple feeding tube shouldn't define who Emily is. I decided to embrace it and educate others if needed.”

Sarah + Joseph

“It would have been a huge help if I had been connected immediately with other tube fed kids and families, so the experience could be shared. I would say better funding of the public tube feeding service is needed so intensive hospital based tube weans could be more accessible. To overcome all the challenges I just tried my best to stay positive and not think beyond the day.”

Melissa + Robbie

“I was grateful that I found a Facebook group with other tube feeding families. Before that, I just felt so alone. I didn’t want to take Robbie out and feed him because I was worried people would look and stare. I didn’t know how to juggle going out to appointments and feeding him, and so in the Facebook group I asked “How do you manage? How do you do basic everyday needs as a mother and then do the tube feeding on top of that? It takes forever.” Learning about other families' techniques and having that support was amazing.”

Be Not Afraid of My Body