Feeding — Scope | Disability forum
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TrendsettersTeam Member Posts: 51
I met a family last week with a little boy of three months. He had a very difficult birth and was born via emergency c section following a hidden placental abruption, a diagnosis of Hypoxic lschemic Encephalopathy - grade 3 was given. This little boy was able to take a bottle and his suck and swallow reflexes were fine. He now has a lot of pain and back arching when feeding and is being fed through a nasal gastric tube with a kangaroo pump and severe reflux has been talked about although not formally diagnosed.

His parent's would like to hear from any one who has experienced this and whether or not their child is now able to take milk or food orally.


  • rosielumley
    rosielumley Member Posts: 4
    Hi, my daughter Emma was born under similar circumstances and was also diagnosed as having HIE grade 3. Those first months were so stressful and difficult and for us alot of the stress revolved around feeding. Emma was in hospital for the first 3weeks and then came home with an n-g tube. Em's suck and swallow were shown to be fine but she found it very frustrating to feed, it would take her a long time to position her mouth correctly and found it tiring to drink more than 20mil at a time. In spite of this we were determined that she would feed 'normally' and so when she pulled her n-g tube out at 6weeks we left it out and then spent the majority of our time feeding her! Emmys SLT recognised the syptoms of reflux at about 8weeks and since then she has been on domperidone and ranitadine. Em's reflux is quite well managed but if she's having a hard day or is unwell then it becomes much more obvious. I do think her reflux played a part in Emmas difficulties with feeding(arching back/taking ages to drink/crying when she saw the bottle) but I think more than anything it was just a very frustrating and tiring thing to do, and drinking enough to sustain herself was hard work!
    Anyway, Emma maintained her weight (25centile) and we started weaning her at 6months. Emma could only have totally pureed foods and the cycle began again of spending hours trying to get her to eat enough to sustain herself. Just before christmas Emma got a stomach bug and just stopped eating all together. It was too much for her and we watched a lively, happy girl fading away. We took her in to have an n-g tube fitted and it was such a relief to know she was getting the right amount of nourishment!
    Emma is now 22months old, she had a gasterostomy 7 weeks ago and it was the best thing we've ever done (aswell as getting her a specialist buggy but thats another story!). She has really perfected dinking from the bottle and still loves to do it but its not her main source of nourishment. She doesn't really eat much orally at the moment but we offer her food without the pressure to eat it and she's interested in other people eating and meal times.
    Those first months-infact the first year- Emma was so unsettled and hard to handle and it was such a steep learning curve but she is now just the happiest toddler. if I can give you any more information or support I'd be happy for scope to give you my contact details. I'll be thinking of you, Rosie x
  • ScopeHelpline
    ScopeHelpline Member Posts: 207 Courageous
    Thank you Rosie, the parent was very appreciative of the information you provided and very pleased to get such a useful response.


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