Peaches Story image

Peaches Story

Peaches is 22 years old and has had a gastrostomy tube for the past 15 years. Sharon, Peaches mum explains how the team at Nutricia Homeward give continuing, regular help. This helps to improve Peaches quality of life.
Peaches loves music, shapes, and colours, but mostly enjoys being with people. She is mainly fascinated with balls as these help her to interact with others.

She was diagnosed with epilepsy at just 4 months old and a scan showed over 250 lesions in her brain. It’s thought the epilepsy had started during pregnancy and by the time she was born the damage was irreparable.
Peaches has what is classed as an undiagnosed neurological disorder. This diagnosis helps because no assumptions are ever made. She is treated as an individual and we adapt to her needs.
Peaches can’t stand and is non-verbal. She has been given many life expectancies and we don’t have a prognosis, but I think that’s positive. If you have a day in mind, you will work towards that day rather than beyond  it. Her life expectancy started as “she won’t make it past pre-school”. It carries on like that, she’s now in her twenties.

Starting tube feeding

Peaches stopped eating when she was 7. This is when she had an NG tube fitted, eventually moving to a gastrostomy feeding tube.
I wasn’t given much information before the gastrostomy tube was fitted. It took me several weeks to feel confident managing it alone. 
Her gastrostomy tube is now the most important thing for her health, and she is completely dependent on it. She uses this for everything, her medication, hydration, and all of her food.

The Nutricia Homeward service

The Nutricia Homeward Service is the one thing in Peaches life that I know will be dealt with in the most professional, supportive, kind, and considerate way. Peaches health is now dependent on her gastrostomy and it is managed by Nutricia Homeward. I have 100% confidence that, should anything go wrong, it will be dealt with speed, understanding, and care. I can’t really put into words how that feels. It is like having a safety net when walking a tight rope.

Nutricia Homeward nursing service

The biggest thing for me was watching Sarah, our Nutricia Homeward Nurse. She was doing a button change for Peaches for the first time. I couldn’t have been more delighted. 
Before Nutricia, I didn't ever feel calm when there was a button change or a medical intervention. It used to take 2-3 hours. Then it would take another couple of hours to calm Peaches down as it was so traumatic for her. With Sarah, it is done with a lot of attention, care, and empathy and in under 5 minutes.  
Since day one, Sarah has an amazing ability to engage with Peaches. Although Peaches can’t reply, Sarah talks to her and this has built a trust between them. Sarah’s approach to me and our family has been superb.

The Nutricia Homeward patient coordinators and deliveries

The patient coordinators are superb! They always phone or email me to let me know what is on her monthly delivery list. I am given a delivery date. There has never been a delivery that hasn’t been exactly what’s on the list.
Nutricia Homeward delivery drivers, in my view, are kind, considerate and polite. If I can’t answer the door, they cover it all up in case there problems with the weather. They always send a text message to say it has been delivered. Their courtesy is exceptional and what makes them stand out for me is their high levels of empathy. They are very polite and what makes them stand out is their understanding. 

My advice to others about enteral tube feeding

I would suggest to others to talk to your Nutricia Homeward Nurse if you have any worries. Especially if you are new to tube feeding. They are a specialist service and are there to help you. So embrace the service and ask all the questions you need. There is nothing I wouldn’t ask Sarah, our Nutricia Homeward Nurse.

The future for peaches

My hope for Peaches is to prolong her life and quality of life. She wasn't expected to reach her twenties. We do all we can to prolong and improve her life, through medications, physiotherapy, etc.

Peaches image

I am grateful every morning that Peaches is here. That makes me then even more grateful for the people who help me. Sometimes I have days when I am worried. Then I remember I have the right people to help us.

The Nutricia Homeward team are like a blanket around us. together, we can’t do anything to improve Peaches illness, but we can improve her quality of life.