"Feeling let down and frustrated"

My son has been in and out of hospital since he started weaning at 6 months old. He had multiple admissions where they trialled high calorie milks and different feeding techniques, however none of this was successful and he continued to lose weight.

In November 2021 he had an NG placed as a temporary measure to try and get his weight back on track and it was made clear that if this worked, then a PEG would be considered. As time progressed, he was continually pulling the tube out despite the use of a bridle. He became so distressed and traumatised by the constant tube replacements that he now won’t allow us to touch his face without becoming incredibly distressed.

During this time, we continued to work on developing his oral skills, however it soon became apparent that he was regurgitating food and was vomiting after each NG feed and his weight was continuing to drop.

In March 2023 he was seen by gastro who agreed something wasn’t right and organised a barium swallow. This showed that he has moderate to severe reflux so a decision was made to insert an NJ to bypass the stomach. This was again agreed to be a temporary measure with him placed urgently on the list for a PEG-J. Initially this feed was meant to be for 10 hours overnight, however it soon became clear that this was unsafe as he was getting the giving set tangled around his neck so the decision was made to feed him over 10 hours during the day.

Whilst initially this seemed to work, it is now absolutely not. He is climbing out of his high chair and cannot be left unsupervised. He is constantly at risk of the tube being pulled out and I believe it is hampering his development being stuck in one place for such a huge amount of time. He is unable to carry a backpack containing his feeding equipment as he is unable to walk and is simply too small (12-18mth clothes are still too big). It is a safety risk for both him and my other children. 

As a family, we have 2 children who are diagnosed with ASD, a baby as well as other children. As a family we cannot meet the needs of everyone with the feeding situation the way it is. The situation is having a huge impact on our whole family. The community staff team in Fife (HV, community nurse and CDC) have been amazing, but Ninewells continues to let us down. There has been no investigations into the other issues that he is having in terms of his development delays and sensory issues and we are no further forward in having any answers or a solution to meet his needs.

Despite numerous contact with Ninewells, we are still no further forward with dates for the PEG surgery and quite frankly, this is unacceptable. I’m frustrated that Ninewells are failing my son and our family by leaving us in an impossible situation at home that is not sustainable for anyone. We just want our son to be safe and to be able to have some normality during the day. He shouldn’t have to be sat down for 8 hours a day! We also want answers as to why he has these gastro problems to begin with. 18months is too long to leave a child like this.