“ according to mother he was vomiting 3 to 4 times a day, bringing up 250 mL each time and was also draining about 600 mL of bile stained fluid in the gastric drainage bag. He was also not opening his bowels despite laxative doses being increased. He had been seen on the Day Unit earlier in the month when some faecal masses had been felt on examination and had a good result from the enema. He looked well in clinic despite the history of significant losses. Due to the history, Dr M arranged for blood tests and these were all normal confirming that there were no signs of dehydration. The history is likely to have been exaggerated as one would expect a child to be clinically dehydrated if vomiting 1000 mL per day and losing 600 mL in gastric losses. However, he looked well in clinic and bloods were all normal.”
“mother walked into the clinic room and announced that she thought that the nasojejunal tube was probably in his stomach, she said A had been unwell overnight and when she aspirated the nasojejunal tube, she got wotsits and milk backup. She told us he was uncomfortable with this but there was no vomiting. I clarified that she continued to give him 75 mL of milk for a few hours at least the night, this was despite knowing the fact that the jejunal to was likely in the stomach. She said he was a little bit unsettled but had not had any significant vomiting. On examination in the clinic, A appeared well in himself. He was happy, bright and alert despite the history of being fed 75 mL an hour into his stomach. We confirmed the nasogastric jejunal tube was in fact in the stomach 6.89 . This is extremely concerning behaviour as mother has knowingly fed him despite thinking the tube was discharged in the stomach. This is on a background of her previously not allowing us to reinstate gastric feeds or antibiotics and obstructing medical staff during admissions when the plan is to do this. I was concerned at the time that this represented evidence of fabrication of illness and possibly attempt at induction of illness. The only explanations are either mother knows that he can tolerate gastric feeds and therefore continue to give it overnight until she came to clinic or mother was trying to induce illness as she did not think he could tolerate gastric feeding but continued to give the feed despite knowing the tube was likely to be in the wrong place. 6.90 I explained to mother that given this history, we now needed to bring him into hospital for a formal reintroduction of gastric feeding. Mother became very aggressive and abusive during the clinic and refused to try any gastric feeding. She threatened that if he became ill it would be my fault. 6.91 In my opinion there is no reasonable explanation for this response except mother is portraying A as being sicker than he is and reliant on tube feeding he does not need. Mother has told us he tolerated gastric feeds overnight but refuses to let us try in hospital.”
“ we have since inspected the extension and note that the hard plastic part of the tube has been snapped in two. This could not have been done accidentally by A by him leaning or kneeling on it as it only reaches to his abdomen. A does not in my opinion have the dexterity to snap the tube himself. The nursing staff have not noticed any fault with the tube. Therefore, in my opinion, the only explanation is that somehow during contact the tube has been snapped deliberately. I am concerned that mother presumed that when the tube snapped, he would need to go to the Hospital B. This is extremely concerning and suggests that the mother may have been trying to sabotage the assessment”
“I am pleased to say that he is doing well. The carers had no significant concerns about him except that he appears to get fixated on certain foods. Currently it is pasta and all he will eat is pasta although he is having variations of this including spaghetti Bolognese lasagne and cheesy pasta. He will also have pizza and turkey dinosaurs. There are no reports of choking or gagging on any of his food. He has vomited on four occasions since he has been with his new carers although they feel this has been when he has had a lot to eat and, in their words, “made a pig of himself!”
“ having considered the medical records, alongside the Royal College of Paediatrics guidelines, I agree with the treating paediatricians that this was a perplexing presentation and that the mother’s actions went beyond those of an anxious parent, and that there is evidence of fabricated illness. I have not found evidence of induced illness”
“ discussions surrounding increasing concerns about A’s mother. Concerns raised: – swearing, shouting, abusive towards staff members on many different occasions. Reluctance to work with the gastro team. Broken relationships with medical staff making it increasingly difficult to provide accurate care for A. Some over reporting i.e. mother advising A has had an unsettled night, lots of pain when feeding increased, not sleeping due to so much discomfort. Mother’s constant objection to increasing milk volumes and requesting A is PN fed (parental nutrition). Staff on duty overnight reporting A has had a settled night. Due to conflicting information and the mother is at times aggressive behaviour was A is close by and aware of mother’s shouting and inappropriate language in ward environment.”
“ On4th September 2020 , our Dietician from Hospital A reviewed A’s progress. He had gained weight, however she noted that calories received from his enteral feeding plan were below the requirements for growth and therefore he had been eating more than the mother was saying. Mother told the Dietician he was not eating anything. The clinical picture does not fit the presentation.”
“I pointed out that without us trying but with much closer observations of what A is doing, A would have no way of getting fluid nor nutrition. M was furious, shouting and abusive in her language. This left A in tears. Mum insisted, despite there being no way of safely giving A fluid (and there were concerns about hypoglycaemia) that she was going to take him home if we weren’t going to do something different (which could only be intravenous feeding.) We reached impasse where I said I would have to call the police if one tried to take now home as this was not safe.”
“I could not offer her any respite to her concerns . The level of concern expressed by the mother just kept going despite reassurance. This was not normal in my experience. It is the lack of engagement with the explained medical realties .”
“The number of infections suffered by A – both in terms of frequency and degree – are out with the clinical experience of the doctors. It is not just the repeated infections that caused him harm – examples of further harm flowing from the infections include; i. Painful blood tests; ii. Unpleasant side effects of the antibiotics (ie. diarrhoea); iii. Impact of regular administration of antibiotics; iv. Further hospital admissions due to late identification/treatment of the infections.”
“Children find intervention extremely traumatic. In paediatrics, we are used to the fact that children with serious medical conditions inevitably have to go through investigations and treatments and we try to make wards as pleasant as possible with play therapies and clinicians are aware of the importance of being kind and stimulating to children, but you cannot get away from the fact that the ward is a hostile environment. Prevents the child from being at home and experiencing normal social interaction – family, parks etc. Then the child experiencing pain, discomfort, and uncertainty of not knowing when the next painful procedure is to take place. For A this was enhanced by the fact that he has GDD (Global Developmental Delay) so that his understanding and ability to rationalise what was happening to him was limited. The level of emotional distress was significant for him. Even on the wards, he wasn’t able to access a lot of the activities – spent a lot of time in his wheelchair so he wasn’t accessing available activities. I would say that for a child to experience the prolonged admissions and amount of investigations that I would see it as significant toxic stress and trauma which we know has an adverse impact on all aspects of development and brain development.”
“It causes confusion. Children are very adaptable but the real risk of a child perceiving themselves as more disabled than they are, it effects self-esteem and confidence and will affect the child’s whole life. The child will accept it and not know any different so will continue to behave as a disabled person.”
“will have added to the stress and trauma. We know from research that children who live in an environment where there is conflict and anger, will develop emotional difficulties and it may impact on behaviour. They may have an exaggerated fight or flight reaction and it may well impact on their own behaviour and lead them to over-activity, episodes of dysregulation and problems in a small setting where they may find it difficult when they are distracted by small stimuli.”
“his early unsafe swallow was not a permanent problem and was capable of improvement. Not only his current improvement but the VFS to support that. From that evidence I think we can assume and predict that he would have been capable of improving to this level more quickly and without the interventions that he had and that the perplexing presentation seems to have been resolved by a change of carer, not by any medical intervention.”
“We depend on what we are being told by parents and it is our nature to accept that the parents are the expert in their child and it takes a shift for professionals to disbelieve something that has been stated.”
“Two points are relevant – one has to be clear that the guidance is new. It only came out in Feb 2021 in fairness to the clinicians. If you turn the clock back, one of the difficulties with fabricated illness where it is not like induced illness where you can do a test and see that the child has been given a substance. This is much more subtle and difficult. We depend on what we are being told by parents and it is our nature to accept that the parents are the expert in their child and it takes a shift for professionals to disbelieve something that has been stated. I am yet to come across a case where I haven’t thought ‘if only’ and I’m sure the clinicians have thought ‘if only’, but there is a certain amount of gathering of evidence that was necessary. One could argue that with hindsight it wasn’t necessary. Looking at the notes, nursing staff had suspicions early on. The guidelines are not helpful in getting the collaborative opinion of health professionals. Whether it would have speeded up the outcome for A or prevented some of those interventions is difficult to say. One would like to think that it would but when one is dealing with subtleties – I’ve spent a lot of time going through the chronology and I had the benefit of hindsight. It is much more difficult as a clinician when you are working with a child and there is another hospital involved with the child as well. The practicalities are quite difficult. As we begin to understand the nature of this problem, we will be able to engage parents in a more meaningful way.”