"A feeding disorder"

About: Midlands Psychology CIC NHS Wirral CCG

(as a carer),

At 6 months old my son (who was exclusively breastfed) refused to start weaning. He was born profoundly deaf, and has limited vision in one eye. He had also been diagnosed with global developmental delay.

Despite his conditions, well-meaning health professionals encouraged me to continue to try and wean him. But he found it very difficult to sit up in a high chair (due to poor muscle tone) and every time I got the tiniest bit of food in his mouth, he would choke and gag.

By 9 months we were still being advised to persevere with weaning, and to try again to introduce the bottle, as if we could get him to accept that, then we would be able to give him additional nutrients and calories. We had tried the bottle several times before, but there was always complete refusal. This happened again, and our consultant suggested that if I denied him breast feeds, then eventually he would take the bottle, even if it took a few days. We were advised that as long as he continued to have wet nappies, it was safe to withhold breast feeds. Following this advice, I stopped feeding him for two days. On day three and four I gave him one feed per day. He still refused the bottle. By day five, wet nappies stopped, and I resumed breastfeeding. The whole experience was deeply traumatic for all of us.

By 12 months I couldn't get a spoon anywhere near my sons mouth. A barrage of well-meaning health professionals had been to our house to try their own methods of getting him to eat. For my baby, this meant strangers shoving spoons near his face, and on one occasion someone shoving their porridge-covered fingers in his mouth while he lay on his back on the floor. With each traumatic experience, his determination to avoid foods increased, my worry increased, and our family became more and more vulnerable.

By 14 months I was back at work, with an exclusively breastfed baby in nursery. I couldn't' even leave him a bottle of expressed milk, as he would not take it. He started to lose weight, and the well-meaning health professionals arrived to talk about having a peg.

Luckily one of our health professionals had told me about Midlands Psychology, and we had just moved to a new health visitor, who had worked with them before, and was happy to help us try and secure NHS funding. However, 'processes' got in the way, and it was only at the 11 th hour, after weeks of telephone calls and resorting to threatening emails, and with the peg seeming inevitable, that the funding was finally granted.

Within 48 hours Clarissa (Midlands Psychology) was sat at our kitchen table (even though it was a Saturday! ) and we spent the day identifying the tactics we could employ to try to get my son to accept the bottle. Eight hours later, he took 5 mls. No words can describe that euphoric moment. The following day he took ten, and by day three he was drinking a small bottle. We then gradually introduced prescription formula, and within a week he was thriving and we were no longer at risk of having a peg.

A few months later Clarissa came back to support us with introducing solids. We employed the same tactics we had used with the bottle, and by the end of the first day my son had eaten his first pureed food. Fast forward three months, and he was eating roast dinners chopped into small pieces, casseroles, fish, all meat and vegetables, pasta and rice. He eats everything, and now has the diet of a normal healthy two year old, and thoroughly enjoys his food!

The support we had from Clarissa and her team has been absolutely outstanding. During the first weeks of treatment we had daily telephone consultations, sometimes of over an hour, even on Friday and Saturday nights, to review what had happened at meal times that day, and how to adapt things for the following day. We never imagined we would get to a point where we enjoyed family mealtimes, but thanks to Clarissa we are now there.

With hindsight, my baby just wasn't ready for weaning. He was delayed in all other areas of development, so why did we think weaning would be any different? He had no access to sound, and limited vision on one side of his face. And he couldn't sit up properly. Meanwhile we had so many hospital appointments, and throughout so many examinations I was asked to breastfeed him to try and settle him. So I became his source of comfort and security while he was prodded and poked, and feeding became a terrifying experience, when strangers bombarded him with spoons he couldn't see properly, and food he couldn't swallow. It's no wonder he became so determined not to eat.

A peg would have meant we could ensure he was thriving and getting enough calories. So in many respects it would have meant he was no longer at risk. But it would merely have dealt with the symptoms, and not addressed the problems. And no mother wants to put their child through any sort of clinical procedure unless absolutely necessary.

Some of the NHS professionals involved were cynical about psychological treatment, but luckily the CCG finally had the foresight to realise that it was worth a shot.

I am so grateful to Clarissa and Midlands Psychology. We avoided an unnecessary peg, and ultimately she has saved the NHS money, for an operation to insert and then remove a peg, and the on-going support of it in between, would no doubt have cost considerably more. Most importantly we avoided an unnecessary operation, she has enabled my baby to thrive independently, and she has helped us to teach him to enjoy food. She has changed our lives.

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