IAQ 3 - Why doesn’t Izzy eat normally?

6 July 2018  |  Tamsin Kingsley

‘Is Izzy alright with grapes?’ a friend asked me this morning at play group. I turned round to see Izzy, clearly taking advantage of me being distracted with Lauren to try and shove someone’s abandoned half grape in her mouth. This is the kind of thing that happens regularly with a one year old. They find things, and on finding, the obvious thing to do seems to be to put it in their mouth. If the object is vaguely edible, most parents end up turning a blind eye since it’s usually too late anyway. Only things are a bit more tricky when your child has an unsafe swallow, making it a lot easier for things to go down ‘the wrong way’. The truth is that I have no idea what would have happened to that grape or Izzy if I hadn’t intercepted, but I wasn’t going to wait to find out. Most of our friends know that Izzy is tube fed, but I’ve kept quite quiet about her oral feeding as it has been, and continues to be quite a tough journey. So I thought I’d fill anyone who’s interested in, starting with a short version of Izzy’s feeding journey from birth (be glad I have Dan as editor, it was about three times the length before he got hold of it). 

I’m not going to go into great detail about breastfeeding (which some will be rather relieved about) because I will end up going off on 100 tangents and would rather give that emotive subject it’s own space and blog post. However, that is where her feeding journey started so that it where we shall begin. I hope you are all sitting comfortably.....

When Izzy was born I had every intention of breastfeeding her, despite being told it could be harder due to her Down’s Syndrome. She started feeding straight after birth, but this was cut short when she was whisked off to Neonates. The next time I saw her she had an ng (nasogastric) tube in, which is normal for poorly newborns, and at this point we had no idea that she would actually be fed by one for the next 10 months.

As she struggled to breastfeed over her first few weeks of life I think we started to realise that feeding was going to be harder work than we thought. Any attempts resulted in gagging and retching, low oxygen levels and colour changes (to blue). Plus she was making less and less effort to actually feed. A videofluroscopy (basically a video version of an X-ray) showed that she was aspirating on thin liquids- some of the milk was ending up in her airways- which is a big infection risk. When we went home Izzy was completely fed by the ng tube. We were offering a bottle of thickened milk too, but she made no association between sucking and being fed, and became less and less interested in the bottle or even a dummy. It became clear that tube feeding was our future for the time being. 

Using the ng was quite stressful! We had to check the ph of the stomach contents before every feed to make sure the tube was in the right place. The tube also got caught on things and pulled out quite a lot, including the first night we came home, and Izzy got rather good at pulling it out herself too. For most people the tube being pulled out means a trip to hospital, but thankfully the nurses were able to teach me how to put a new tube in at home, and avoid many hospital trips! We were changing the tapes on her face all the time to keep it taped down, and the tapes were making her face really sore. The tube itself caused her sensory issues and increased her gagging and vomiting. It also meant that there was less space in her already narrow nostrils for air. Suffice to say that we were not fans of the ng tube, and were quite happy to be on a waiting list for an alternative, even if it did mean surgery to put in a gastrostomy (tube that goes straight into her tummy). 

We were also talking to the surgeon about anti-reflux surgery (nissen fundoplication) as Izzy was getting sooo sick and stopped putting on weight. The surgeon however decided she wasn’t bad enough to need it. We missed our first slot for gastrostomy surgery and had to go back on the waiting list. 

As it turned out, Izzy had no intention of waiting her turn. She gave us the fright of our lives the night before she was due to come home from hospital in March, and went into respiratory arrest (stopped breathing). It turns out she had vomited while crying and aspirated a large amount of milk. I told Dan that I was not under any circumstances taking her home without her having had the anti-reflux surgery and gastrostomy. I don’t think this was unreasonable given that we and the doctors agreed that she may well not have made it if she had crashed one day later once we were home, but I think Dan was slightly worried by the prospect of me giving the drs a piece of my mind in my emotionally elevated state. Thankfully this was not necessary, as they agreed that her surgery was now urgent. Before we knew it she was out of surgery and soon breathing for herself again. We were quite shaken by her near death experience, but the outcome was great. It could be argued that it shouldn’t have taken a dramatic episode for this to become urgent, since all the things that caused the crash were already well known to her drs- severe reflux and risk of aspiration. But we are learning that unfortunately seeing so many different drs and therapists means that the dots don’t always get joined up, and how important it is for us as parents to be involved as informers and advocates.

So she is now fed all her milk (a special kind that gives her what she needs even though she’s above normal weaning age) via her gastrostomy. It can still get pulled out which is more serious than with the ng, but as long as it gets plugged quickly it shouldn’t close up, which is the main concern. It also got infected in the first few weeks which meant she needed IV antibiotics, but this hasn’t happened since thankfully. 

She needs such a large amount of milk now that it’s hard to keep her stationary long enough to have them during the day. She therefore has over half her milk on a continuous feed overnight, and the rest split between 3 ‘meals’ in the day. This means she can sit up and feed while the rest of us are eating which is nicer for everyone. 

Now that her breathing is doing better we are working with the Speech and Language Therapist to try and improve her oral feeding. It’s very hard to say what is safe for her without another videofluroscopy, which isn’t possible until she can take 4 teaspoons of food. This just means we have to take it really slowly at this point and be led by her. She is interested in food and enjoys the taste of puree, but isn’t amazing at moving it to the back of her mouth and swallowing. We are hoping that over time she will learn to use her swallow more and we can gradually increase how much we give her.

We have to be really careful what she puts in her mouth, and watch her like a hawk with water, sand, stones, leaves etc., as well as actual food. Like with her breathing we really have no idea what the future holds, but it is clear to us that her feeding tube will be with us for the time being. It keeps her alive so we don’t really mind, though the hope is that one day she won’t need it any more.