"My son's voice should have been heard. " Alfie's ARFID story

*trigger warning: bereavement, grief, child loss.

Saturday 5th July is Avoidant/Restrictive Food Intake Disorder (ARFID) Awareness Day. 

We spoke with Lucy Morrison who shared her heartbreaking experience with us to help raise awareness of ARFID, following the tragic death of her 7-year-old son, Alfie. In December 2021, Alfie suffered a fatal cardiac arrest at home - a consequence of undiagnosed ARFID and the malnutrition it had left him with.

“Can you tell us a little bit about Alfie, what was he like?” 

Alfie was a happy, bouncy and smiley boy with a love for everything sensory, especially water. He was happiest in the pool on holiday and he never missed bath time! He was very outdoorsy, he loved the feeling of the wind and watching the trees blow, and playing with his doggy, Jack. He loved his car rides and would count numbers or sing along to his own little songs as we were driving!

“When did you first start noticing signs or concerns around his eating?” 

Alfie always struggled with food, from the very start of his life. He had Autism and struggled with sensory issues. Weaning him onto solid food was impossible as he would vomit, choke and become very distressed at any new textures that were offered to him. Alfie drank formula milk for the majority of his life and would become distressed and upset if his safe foods were taken away.

“What did daily life look like with ARFID - for Alfie, and for you and your family?” 

Mealtimes were stressful if any of his routine had changed, and introducing new foods was impossible for Alfie.

He wasn't being fussy, he was genuinely distressed and upset. When it came to eating food with textures and lumps, Alfie would gag on the food. He would really get distraught.

It was a challenge for years and despite trying various different ways to approach Alfie’s diet, it became apparent that this was a medical issue, not a behavioural problem.

“At what point did ARFID become part of his diagnosis (if diagnosed)?”

Alfie attended a Specialist School where he had a Consultant Paediatrician, a GP, plus a mixture of other referrals and specialists around him.

However despite my concerns being raised on several occasions it wasn't until Alfie's post-mortem that he was officially diagnosed with ARFID. A condition me and my family hadn't heard of until it was too late for us.

“What would you want other parents who might be seeing early signs of ARFID to know?”

If I could give any advice to parents or carers in the same position it would be to push for professional support, and to keep allowing the safe foods as much and as often as needed. Trust your intuition and do what is best for your child.

It might not always make sense to other people but that's a part of the journey.

 As a parent, you're constantly battling and asking for support and you're just left to do it on your own. I felt like I wasn't believed and like I was going crazy. But it's the system which has to change.

“Do you think that ARFID is well understood within healthcare and education settings?”

There is not enough education or awareness around ARFID, which is sadly proven by Alfie's story. Health professionals don't know enough about it, nor do education professionals, or parents. Food issues are often masked by Autism, when in fact it is a separate condition, an eating disorder. 

Unfortunately for us, there were missed opportunities in Alfie's care over a long period of time. And there were no guidelines for ARFID until after he passed.

“What changes do you hope to see?”

I hope by sharing Alfie's story and raising more awareness around ARFID, that resources and education will be improved and the right support will offered to those that need it. There needs to be big changes in the Healthcare System around Eating disorders.

By sharing our story, if it prevents just 1 family, going through the heartache that I am living with on a daily basis, then it is worth sharing. 

Follow Lucy on Instagram @Alfiesspectrum

For support on child loss please visit Cruse Bereavement.