Our Story

from surviving to thriving

As I sit here writing our story, Mason is enjoying a roast dinner, the same as his siblings, and for the first time I am taking a minute to fully reflect and appreciate how far we have come in his feeding journey.Mason is my middle child, born in 2015 with Cerebral Palsy. One of the associated complications is not being able to chew or swallow food so he has never been able to feed orally. After a lengthy stay in NICU, he was discharged home to us with a Nasogastric Tube and a hallway full of boxed nutrient-enriched formula.In what was already proving to be a difficult first few months with our new baby - a diary full of hospital visits, diagnosis after diagnosis and having to be a present parent for Mason’s older brother on very little sleep - feeding was not something I expected to be such a huge issue.I don’t wish to speak negatively about the hospital-issued formula. It works for many people and it’s lifesaving for some, but it did not seem to be compatible with my child.The reality was that his stools were basically liquid and he vomited. A lot.Keeping this liquid in his tummy became a daily struggle and one that we hardly ever won. When the doctor suggested that the sickness was reflux, I fed him upright and kept him that way for hours after a feed. When it felt safe to put him down, it was time to feed again.Leaving the house was a risky business too, as a nappy or vomit incident usually meant a whole outfit change for me, as well as him.Reflux made for a stiff and unhappy boy. We ventured out of the house less and less, and this aspect of life remained difficult and stressful for the next few years. If this sounds familiar, you are not alone.But my biggest worry was that Mason just wasn’t growing. I had stumbled across the idea of giving him real blended food through his tube but quickly found out this was not recommended to do whilst using an NG tube and I would have to wait for Mason’s PEG surgery at two and half years old.When that time came, I was eager to get started but was surprised to receive a waiver from the NHS dietitian who wanted me to commit on paper that I was going against medical advice. This felt alarming, after all it seems wrong to go against doctor’s advice, but I had done my due diligence and felt confident. After all, why could he not have real food? To my knowledge there were no issues with his gut, it was just the way his food would be delivered to his stomach that would be different.Once Mason had recovered from his PEG surgery, I introduced real food very slowly starting with a simple porridge and banana breakfast. Quickly I noticed a positive difference in his bowel movements and when he wasn’t being sick after breakfast I was encouraged. Gradually I introduced more foods throughout the day and eventually replaced formula with normal milk. It didn't take long and wasn't as difficult as I had expected.Next I set about getting Mason’s weight up and getting in the calories that he desperately needed, but packing a lot of calories into small volumes was harder than it sounds. After all his tummy was still so small and he couldn’t tolerate big feeds.With very little advice from the dietitian, but with some great advice from fellow parents in online forums, Mason started to gain weight steadily. But that’s not all I noticed. Mason‘s complexion had changed, he had more colour and he started growing upwards as well as outwards.Over the last 10 years my husband and I have made some hard decisions on our child’s behalf but this one - the introduction of real food - is by far the best decision we have ever made for him. Being the parent of a profoundly disabled child means relinquishing many aspects of their care. Mason’s diet is one area where I have been able to take that control back.After a few years of feeding him real food, Mason reached his ideal weight and I stopped counting the calories.He now enjoys three main meals a day and a few snacks. His meals are built from the same kind of meals you’ll find in The Blended Diet Family Recipe Book, which are designed to be part of real family life. It feels inclusive. It feels natural. It feels right.There is so much to worry about when you have a child with complex needs, but for the last eight years feeding hasn’t been one of them.

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