Seeing the child Vs Seeing the Diagnosis

As you can imagine Owen has many appointments. After most of those appointments we sometimes receive a written report about what was discussed and found at that particular appointment. A copy of that letter is also sent to his local GP and various relevant others.

At the top of these letters is Owens list of medical issues written in bullet point form. Sometimes all his “issues” are listed, sometimes just mixture of a few of those they seem relevant for that appointment. This list can also is used to summarise Owen’s medical side when being referred to new services.  

Here is an example.

  • Ex Prematurity born at 28 weeks gestation 
  • Cystic Peri ventricular Leukomalacia  (PVL) confirmed on MRI scan
  • Spastic Quadriplegia Cerebral Palsy
  • Retinopathy of prematurity and ongoing opthalmological concerns (eyes)
  • Global Developmental delay
  • Dysphagia (swallowing difficulties)


 I feel uneasy doing this, but I hope it may give some of you who may not know more of an idea of Owen’s medical issues so you know where I am coming from in other posts.

 I most likely feel uneasy writing this is probably because I usually skim that part of the letter now and just look for anything new that wasn’t discussed at the appointment.. normally following by a session on google etc.

No matter how many times you read it, it never becomes easy reading.

The trouble with solely looking at the medical side is that you can get so bogged down with the negative.  I feel it is my job as Owens advocate to express the positives.  I feel I have to do this at most appointments. Particularly if whoever we may be seeing that day has never met Owen and has only read his notes.

So far at both Community Paediatric appointments that we have had Owen has took them by surprise. Owen on paper can be  very bleak reading. During appointments I make sure they meet the real Owen not just another name on the list or a NHS number. Both times they say “he has real spirit.. he has a lot going on.. he is determined.” 

Owen can be a real charmer and I always feel an appointment has gone better if they get the chance to meet the real Owen.

 I cling to those positive comments much more than our first discussions with doctors about the future. Where we first got told by a consultant that Owen had PVL. The Consultant went on to say it was was one of the worse cases he had seen in his career.. In the same meeting he said couldn’t tell us what he would or would not be able to do. We were told to take it one day at a time. To expect he may not reach any milestones not even to SMILE.

The consultant told us about all the support Owen would get to help him reach his full potential. The Consultant made sure many services were aware and even got a physiotherapist to visit him in his bed while still in SCBU to do an assessment for a referral so that would be in place as we left.

 I remember the end of that conversation with the Consultant. He told us doctors didn’t know everything and what ever we did  what we must not do is give up on HOPE

 … so that’s what we do… we HOPE.

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