We enjoyed all the activities on offer and even trips out as a family to the pantomime which we never imagined doing. Fast forward a few years and we found out we were pregnant again. This pregnancy transpired to change our lives. At our 20 week scan we were told there was a problem with her heart. As soon as we left I contacted Michelle who was amazing and had a good idea of what heart condition she had and actually knew other families in the area who were also going through the same.

Within a week we were down in Great Ormond Street being seen by the cardiac consultant for a complex scan on our baby’s heart. She was diagnosed with hypoplastic left heart syndrome. We were told this was a rare condition that was life-limiting with palliative care. They offered a few options including ending her life but we went with surgery at birth and then 2 other stages later in early childhood.

We had our little girl a few months later after lots of preparation from Little Miracles and support through counselling. She had her first open heart surgery at 6 days old. Madison had a very rough ride after this and was very poorly. She was tube-fed through her nose with a tube called a nasal gastric tube or no for short. She had breast milk through the tube and then we needed to give more calories to build her up so started to add a formula in. This made Madison very sick and she vomited everything. So she had a few different formulas. Nothing really agreed with her.

At 4 months old she had open heart surgery again. This was very successful and she recovered well. She was now ready to come home but she was still being very sick and not putting weight on. Her feeding regime ended up being a very slow feed over 23 hours. To go home we agreed to have a more permanent feeding tube because she just didn’t have a suck or swallow so couldn’t feed orally.

At 6 months she had her feeding tube placed in her stomach. This meant we could feed her easily and monitor her sickness without her feeding tube disappearing out of her nose. This is very dangerous when they are connected to a feed and the carer only has 2 hands to use as you can imagine my husband and I had become a circus act by this point.

Roll-on a couple of year and Madison was still quite poorly and vomiting daily still. She also looked poorly and we couldn’t get her to gain any weight. One day I was looking on Facebook and discovered a post about tube feeding using real food. I had no idea you could put food down the feeding tube to give nutrition I thought it had to be formula. So after lots of research and discovering this looked like a great option for Madison. I went to our dietician appointment and I asked about wanting to do blended diet. I was told no and it was dangerous and not supported by her. But I decided to go ahead unsupported. I joined a Facebook page called ‘Blended UK’ where I discovered a whole community of families doing the same as me and for the same reasons as me. There was lots of advice from dieticians and nutritionists that did support. In America this is the preferred way of feeding a tube.

We started slowly using a 4 month-plus pouch of food that was smooth enough to go down the tube with no blockages. Then as Madison tolerated this well i started making all her food myself. She had roast dinner, pizza, spaghetti, smoothies, milkshakes and yes, McDonald’s! Eventually Madison started eating orally so i would put some of the food on her tray and some blended through her feeding tube. 6 months into this new feeding journey Madison had another dietitian appointment. Her weight had increased and her height! She was finally on the chart. She also looked amazing and had energy so she wasn’t asleep all the time. She also wasn’t being as sick. The dietician still wasn’t helpful and wouldn’t supply the correct syringes but she did talk about how good she looked and decided it must be from the oral foods so advised me to reduce her intake of formula. It wasn’t from that, it was from the food I was feeding (I wasn’t giving her any formula by this point).

Madison has since had her last scheduled open-heart surgery and we did blended food as soon as she came back to the ward. We had a brilliant dietician who was really supportive. While in intensive care Madison wasn’t allowed blended food. But the dietician had actually discovered a new formula that was made with blended fruit, veg and chicken. So we agreed to take part in the trial. We were worried about vomit and Madison going backwards again. But she didn’t, for the first time she tolerated the formula and went on to full feeds of it really well. So then we came home the formula was prescribed as a feed. So now we do a mix of blended food and this formula depending on our schedule.

As you can imagine this was very time-consuming and takes a lot organising especially for hospital appointments. This is when I started exploring there were companies that pre-made blended food. But I couldn’t find a company in the UK. Then again at a group session with Little Miracles i was advised there was a lady who i should get in touch with as she wanted to get a blended food pre made into circulation. That is when i reached out and chatted with Sophia who understood all my needs and disasters. I am so honoured and excited to work with this amazing company and help more families discover blended food and hope this way works for them as it has for us.

We have a new dietician at home now who fully supports blended feeding and Madison’s school also support this and feed her food while eating lunch with her friends.

Families with additional needs have a difficult and very different life but with charities like Little Miracles signposting and putting us together makes our family smile and create memories that will last longer than times we have struggled with. Without them we wouldn’t have Madison here now. We wouldn’t have discovered the amazing Sophia and Nick. So thank you Little Miracles."