During Feeding Tube Awareness Week, we like to help raise awareness and increase understanding of tube-feeding by sharing the stories of the tubie kids within our Hannah’s House community.
This year, we’d like to introduce Everleigh, an adorable baby girl with a love for the outdoors. We spoke to her mum Stacy, to learn of her story.
Tell us about Eveleigh’s personality? What does she enjoy doing?
Everleigh loves being at the park and at the beach. So loves listening to the birds, feeling the wind on her hair, laying in the water & feeling the waves bounce her around in her floatie.
Can you tell me a bit about Everleigh’s diagnosis? When/how was she diagnosed? How does this condition affect Everleigh?
Everleigh started having seizures within the first 24 hours after birth, she had since continued to have daily seizures since then, changing in characteristics every couple of months.
She was officially diagnosed with WOREE Syndrome on the 21st December 2022, after waiting 9 months for her genetic testing to return to us. WOREE Syndrome affects every part of Everleigh’s life and daily interactions.
She has severe global developmental delays, impaired vision and hearing, an unsafe swallow and aspirates on all fluids, has extremely low muscle tone and will never be able to sit, crawl or stand voluntarily.
What does caring for Everleigh entail?
Everleigh require 24/7 one to one care, and two to one care while travelling. Everleigh has 30 plus seizures every day, some of which include breath holding seizures that require oxygen and rescue meds. She is also a high risk for choking and aspirating, therefore cannot be left alone at all, in case she was to stop breathing.
Everleigh also does not generate voluntary movements herself, so requires to be repositioned throughout the day, while also helping her to clear secretions.
Can you share a little about feeding Everleigh?
Everleigh had an Nasogastric Tube (NGT) placed after birth for roughly 2.5 weeks, while she gained the strength to suck and swallow herself. We went home from the Neonatal Intensive Care Unit/Special Care Nursey without a NGT but had another once place at 10 weeks old which she has had since. Everleigh has an unsafe swallow and delayed swallow, she also aspirates on all fluids.
Everleigh also never showed us hunger cues and drank the volumes needed to be safely hydrated.
How does Everleigh’s diagnosis and care needs affect you as a family?
Everleigh’s diagnoses has impacted all aspects of our lives. From work, to finances, our relationship, travel and friendships.
It has required us to make changes to how we go about our daily living, to ensure Everleigh is always well cared for, is safe and is comfortable. This requires a lot of forward planning, organising and the constant help and support from our friends and family.
Sometimes something as simple as trying to leave the house to get coffee, or bread and milk can become near impossible, so having a solid support network of people that understand our families needs and Everleigh’s needs is really important.
How does Hannah’s House help support Everleigh and your family? What difference has this made?
Having Hannah’s House support workers come weekly, means I am able to run day to day errands without putting Everleigh at risk, or making her uncomfortable, as I am unable to travel in the car with her myself. While also giving me a break, to be able to enjoy a cup of coffee myself or catch up with a friend to help with the mental stress of day to day life.
Feeding Tube Awareness Week runs from 5-11 February 2023, and aims to increase awareness and understanding in the community by raising some of the challenges faced and highlighting the day-to-day impact of tube feeding on individuals, carers and families.