In February 2025, we welcomed our second born son, Ifan. Unfortunately, Ifan’s birth was not straightforward, and we stayed in hospital for a few days afterwards while he was having frequent blood tests to check his blood sugars and his bilirubin levels. At the time, we yearned to go home, but now, we wouldn’t change a thing even if we could, as Ifan ended up being diagnosed with FCS at just 5 days old, something that may had been missed had his start in life been different.
During the days leading to diagnosis, my husband and I literally lived in the hospital with Ifan, with the number of practitioners visiting us rapidly increasing, and their medical status becoming more senior. Each person kept telling us they’d never seen anything like Ifan’s blood, never known a diagnosis like him in all their years of working, and that he was literally “one in a million”. These things only frightened us, and I would urge professionals to be mindful of the language they use with families who are awaiting a diagnosis.
I was told to stop breastfeeding (something I’d done for 18 months with my first born) and I found it hard to accept this, I suppose as I still couldn’t wrap my head around what was happening. Ifan went straight onto prescription milk and was subject to frequent blood tests to track his triglycerides as they gradually decreased (they were 113 when he was born and they got as low as 7 on his formula). Once the diagnosis was official through a genetic testing, we were assigned a plethora of practitioners, spanning across four hospitals. It was confirmed that Ifan’s diagnosis is autosomal recessive as both my husband and I carry faulty copies of the gene- we both have been referred to adult dietetics as our triglycerides are higher also because we are carriers. Thankfully, our three-year-old son is not affected by FCS, although he is a carrier, also having marginally higher triglycerides.
We have been told that Ifan is the only child in Wales with FCS and is the youngest to be diagnosed in Britain. We understand that it is rare for FCS patients to be diagnosed so young in childhood, and as a result it means that most of the UK population with FCS have been diagnosed at a much later age. We are eager to make connections and hear lived experiences, and anyone who has supported or been through this at a young age we would be grateful to connect.
Ifan turned One in February 2026, and we still feel we have SO much to learn about FCS. Luckily, my husband Adam is a chef, which has been a blessing to us. With Adam’s food knowledge and skill, we have been catering to Ifan’s diet as best as possible. Once Ifan turned 6 months, we started to slowly introduce food into his diet. This has been and continues to be closely monitored by his medical team at a 12 weekly metabolic meeting where we discuss his triglyceride levels, his overall health and diet. Once food was introduced, we slowly increased the fat levels each month, according to his triglyceride levels. Some months we saw an unexpected high level, so we would revise the daily fat and make changes where necessary. Ifan is now at 3g fat per day and his levels are sitting comfortably at 9. Adam makes his own bread and butter (using prescription MCT oil), he roasts and puree’s vegetables and is constantly researching and experimenting in the kitchen- who knew feeding a baby could be so exhausting and so expensive! Adam is hoping to upload his recipes onto the FCS website for anyone who is interested in sharing ideas. Most recently we made Ifan his very own birthday cake and I will admit, I got quite emotional knowing it was something he could safely eat, meanwhile my three-year-old was inhaling a Colin Caterpillar cake, I’m not sure I’ll ever get used to how opposite my children’s diets are.
Our main goal for Ifan, is that he remains as healthy as possible. Our next aims for him are that he can live a life that is full, with the hope that we can educate ourselves about FCS to the best degree and ensure this is something we can incorporate into what I hope to be, a beautiful life.
