Looking back two years ago, when Jenson was coming up to six months, I remember questioning my lack of enthusiasm about the prospect of weaning. Why did the thought of presenting Jenson with a spoonful of slop not fill me with excitement?
Up until then we had experienced six months of relentless anxiety over feeding, so anything food-related was a necessary evil and not a thing of joy. Each bottle was prepared with a looming worry of whether he would drink any of the contents.
I was undoubtedly obsessed with his feeding. I was making daily lists, counting Jenson’s consumption to the nearest ml and even estimating the breastfeed volumes! I was totally bewildered at the guidelines on the formula boxes where the size of the suggested bottle was bigger than his consumption over 24 hours. I was in awe of the mums that were feeding while walking, chatting, doing the chores, in the buggy. For Jenson, any noise, any person coming into the room, or any variation on our standard feeding position, would put him right off his suck and we were doomed for another 3 hours with a grumpy, agitated and unsatisfied baby. It was a conundrum. He was hungry. I was a wreck.
While pregnant I had worried about being an incompetent mother. Not being able to cope with feeding, lack of sleep and all the usual difficulties that a new born presents. But secretly, I reassured myself that I was an intelligent woman with an amazing support network around me, so how silly of me to fret; everything would be fine. So it was hugely distressing to me that I became that very mother I had worried about becoming; the one who panics when leaving the house, who cancels on play-dates, who leaves shops without having bought anything. It is only when I look back I see how extreme Jenson’s feeding problems were and how they had completely taken over his babyhood, and my life.
So it came as no surprise when, at six months of age, Jenson showed very little interest in my lovingly prepared purees. I persevered, I tried every shop-bought brand, home-made, adult food. I tried disguising Weetabix in his milk and cutting a bigger hole in his teat! It’s not that he didn’t like drinking his milk. In fact, if he had to wait 30 seconds while it reached the exact temperature of his choice, he certainly let us know about it! But he was often satisfied with an ounce, maybe two, and I was left bewildered, wondering if he would return for more in 2 minutes or 2 hours. But as for food, be it puree, fruit, chocolate, crisps, toast, yoghurt, he simply wasn’t interested.
For 7 more months I was in the dark. No answers were forthcoming about why Jenson didn’t want to take a spoon, a carrot, anything, into his mouth. We had all the resources of the NHS and beyond at our disposal, and we had exhausted them all. We tried playing trains and planes and rolling around in yoghurt and feeding in the bath. We tried thickening his milk with strawberry and banana; he cottoned on to that straight away and spat the teat out post-haste. He loved to put his toys in his mouth! But he knew straight away that something was edible and he treated it with contempt.
The other mums’ babies were getting down and dirty with their food while Jenson was the cleanest baby you could meet with no T-shirt changes necessary and a whole drawer full of bibs left with their labels still attached. While my mummy friends were debating the pros and cons of ‘feeding on demand’ and ‘baby led weaning’, I was worrying over Jenson’s ambivalence to milk altogether.
I lost count of the times I had to explain to a GP or a new consultant about his unexplained weaning issues, and answer for my inability to wean my own child. That feeling of failure has never been so acute. Not to mention the increasing anxiety I had about feeding in public where he was getting to an age where he should have been sitting in a high chair and feeding himself.
At 13 months’ old, we learned of Jenson’s genetic disorder. This shed some light on matters, but did not explain everything. We knew a handful of things for sure: Jenson has global development delay, so perhaps does not understand about food and feeding the same way other babies do; he has hypersensitivity around the face so is very resistive when you present him with a spoon; he has muscle tone changes which includes the muscles in his mouth and throat, which makes chewing and swallowing more difficult (but we have no idea to what extent); and he has a high palate, so maybe cannot move the food around in his mouth as easily as he should be able to. We have no idea if, and to what extent, any of these factors contribute to our dilemma, and no one appears to be able to tell us. Many children with Jenson’s chromosome disorder do not have any trouble with eating, and those that do, their issues are more physiological than sensory and behavioural.
Meanwhile, Jenson continued to be weighed and assessed by various specialists. Visits to the children’s centre and to the paediatrician meant another ‘point’ on Jenson’s graph. I fretted each time about where Jenson would sit on his centile graph. I remember wanting to throw a street party when he once reached the 9th centile, which corresponded with moving over to high-calorie formula. But alas, he floated quickly back down to around the 2nd centile.
I always associated tube feeding with ‘sick’ children, and Jenson wasn’t sick, he was just different. Yet, slowly, the idea of tube feeding was becoming more appealing, as Jenson’s weight was plateauing and his needs were only going to continue to increase with no evidence of his appetite doing the same.
Not to mention the times of sickness, when even just a common cold would cause him to refuse his milk altogether, and he had not yet accepted water from a bottle so dehydration had brought us to the children’s ward on two occasions.
We had become accustomed to the once or twice nightly feeds, and luckily he would usually fall back to sleep fairly swiftly, but it was draining. I was back at work and feeling the pressure, and Matt was working long hours and was needed more than ever during the night to help me out.
The date for the appointment with the gastroenterology surgeon arrived. It surprised me just how agreeable he was to Jenson being fitted with a feeding tube. I wasn’t sure how I felt about that; I think I secretly wanted him to tell me that there was nothing wrong with Jenson (after all he wasn’t like those other children that were really ‘sick’, and needed the tube to survive), but on the other hand I felt that perhaps we were finally making progress. The surgery for the tube would be arranged for about 6 weeks’ time!
I still had doubts about whether it is the right thing to do. I had the constant niggling feeling that I could have done more to encourage him to eat, and that by tube feeding, we may be alienating that avenue even further. I had read about children becoming lazy, relying on the tube, and not to mention the social implications now and in the future, plus the health and infection problems.
So, I did what anyone else would have done: I googled it. This led me to discover a facebook group called ‘tube feeding support’. Now, I’m not one to believe in fate, destiny or coincidence, but something happened that day that was nothing short of divine intervention. My attention was drawn to a blog by a mum, Rebecca, whose son Michael was not much older than Jenson, and who had experienced a similar tale to us. I read her story with intent, fascination, and amazement, and by the end, with tears rolling down my cheeks, I knew what we had to do. Jenson could eat, should eat, and is entitled to be taught to eat, without surgical and invasive intervention. The fog lifted and the passion in me grew.
Michael’s story was compelling, from the miraculous transition he made from being excruciatingly undernourished, to ‘normal’ eating, to the highs and lows that his family went through, and the strategies and techniques that Clarissa at Midlands Psychology utilised to crack this. I continued my research and learned of many other families that had also benefited from Clarissa’s magic. Midlands Psychology is a social enterprise which means they are not-for-profit but they are outside of the NHS provider arena. Extraordinary funding is required in order to be referred by the local health authority.
The new few weeks involved me liaising with Rebecca and Clarissa. It was a massive exercise in fact-finding, evidence-pulling, and finally in approaching our consultant paediatrician. She was agreeable to applying to our local health authority for the funding. With me leading on the application, I completed the 15 page document, coordinating and gathering reports and information from each of his health professionals. The completed application was a force to be reckoned with; even the paediatrician admitted we had a strong case.
Waiting for the panel’s verdict was a painful few days. Each day that went by with no news I was more discouraged, and Jenson by now was showing less interest in food than ever so we needed this all the more. By now I was very well-read about the benefits of teaching children with acute oral aversion, such as Jenson, how to feed orally, and the importance of avoiding surgical intervention unless it was clinically unavoidable.
The dreaded letter arrived, and as anticipated, it was a ‘no’. We needed to demonstrate extenuation of all local services of our NHS (which we thought we had already done, through the dysphagia specialist, dietician and SALT services). We were referred to another feeding specialist, this time an occupational therapist called Anna with specialist training in the SOS (Sensory Oral Sequencing) approach. We also saw a learning disabilities child psychologist.
We embarked on a series of weekly home visits from Anna. Anna worked with us on familiarising Jenson with foods and making the experience fun, stimulating and relaxed. Anna helped me realign my expectations from wanting Jenson to eat, to simply wanting him to touch and play with food. We achieved this almost immediately, and ‘messy play’ was a huge success! For the first time, Jenson was having fun painting with yoghurt and crumbling crisps. I learned not to stress that he wasn’t putting them in his mouth. Anna’s systematic approach was surprisingly successful; within three weeks Jenson was licking his fingers and licking cream cheese from a carrot.
Our turning point was when Jenson took custard from a spoon. There is no doubt this was a direct result of Anna’s intervention; Jenson had been re-programmed to understand that food was entirely non-threatening, and was there to be enjoyed. Rather than thrust the spoon away, he played with it, licked it, and finally, let us bring it to his mouth. I was convinced that this was an isolated incident, but one-and-a-half pots of custard later, I was on cloud nine. The next day, and the day after that, more of the same. I was still doubtful; I was no doubt protecting myself from the acute disappointment that I was convinced would ensue, when Jenson refused it again altogether. This day never came.
The next step was strawberry yoghurt. Then apricot. This was achieved in tiny baby steps, because there was too much at stake to lose Jenson’s trust. A typical feeding episode involved around half a dozen spoons landing on the floor, slop splattered all over the table, floor and highchair, clothes thrown in the washing machine and Jenson thrown in the bath. But we didn’t care. Our little boy was eating.
We have progressed now to a point where Jenson recognises food as a replacement to his trusty milk; he understands that this will satisfy him and he actually points to his highchair rather than the milk bottle! What’s more, he is regularly sleeping through the night, which has revolutionised our household.
Time will tell whether Jenson will extend his repertoire to a wide range of foods and textures; but for now he is a healthy weight and a happy boy. I have accepted that he will always have his little idiosyncrasies, and not only have I learned to deal with them, I cherish them.
We owe so much to Anna for her dedication, sensitivity, perseverance and understanding. She treated us as individuals, she listened to our story and took on board the wider family implications, adapting her approach and intervention to be specifically tailored to our needs.
Many times throughout Jenson’s life I have referred to that elusive ‘magic wand’, and how great it would be to solve a problem or predict an outcome with it. Well for the first time in two and a half years it has made an appearance, and it was delivered by Anna, Jenson’s feeding fairy.