Petition Closed

This petition is Important due to the fact our son Dylan Michael James O'Brien Age 2 death could and should have been prevented. There were many failings in our sons care which was highlighted in a Itv Wales Programme back in March and can still be viewed online.

Letter to
The Welsh Assembly First Minister Carwyn Jones
The First Minister Carwyn Jones.

I am writing to you in relation to the tragic Death of Dylan Michael James O'Brien who died at the University Hospital of Wales on the 15th of June 2012. We are aware these failings have come to light in Dylan O'Brien's care which subsequently contributed to his death

• A complete failure to diagnose a metabolic disease
• Midwives failed to refer to the CONI program despite being informed that there had been a sudden infant death on the paternal side
• Due to the size of the true knot in Dylan’s cord the placenta should have been tested
• Lack of communication between medical professionals
• The referral from the GP to paediatrics took too long
• Misplaced or non-existent genetics referral, which took receiving a letter of complaint from MP Jonathan Evans for this referral to be made. (This should have been made 19/09/11 but was actually made 16/03/12)
• Results of blood tests taken 25/07/11 showed that Dylan presented an elevated Creatine Kinase level of 322 the normal level being 175. This should have indicated there was an issue.
• Results of Dylan’s examination 25/07/11 showed that Dylan’s back revealed a mid-lumbar kyphosis scoliosis and lordosis. His muscular skeletal system revealed that he suffered with hyper extensible joints at his hips and ankles. Results of the chest x-ray revealed that Dylan had minor inflammatory changes around the hilar regions (lungs) mainly on the left. All of this should have indicated there was an underlying cause for the symptoms Dylan presented with, despite all of this DR Mathura decided to wait until the next appointment before referring Dylan to genetics which subsequently did not get made until a further 8 months.
• The first sleep study taken place in 25/10/11 revealed that Dylan had some desaturations in his oxygen levels, although DR Tewari wanted to repeat this test because he wanted to see if Dylan would thrive given all of Dylan’s symptoms he was not going to thrive and therefore should have been seen by DR Williams at the earliest opportunity.
• There is a serious problem with the lack of HDU beds in the children’s hospital for Wales. At present there is only 4 and 3 of those are permanently occupied, which led to Dylan’s operation being cancelled twice by the NHS for no bed being available.
• Some sort of breathing equipment should have been provided to manage Dylan’s nocturnal breathing difficulties at home.
• On the 16/03/2012 Dylan received further blood tests because the emular cream was wearing off the needle came out and DR feugason was unable to preform a full Glasgow screening. He attached a letter to Dylan’s notes to ask if this could be done whilst under anaesthetic. He failed to check to see if the operation had taken place had he done so this test would have detected a metabolic disorder.

At present there is a investigation taking place however the Cardiff and vale health board have now decided to bring in metabolic specialist DR Graham Shortland this should have been at the beginning of the investigation not at once almost all Dylan's DNA has been used on previous testing also due to the fact the pathologist said at inquest Dylan suffered with a metabolic disease and suggested a mucopolysaccharidosis (MPS 1, MPS2 MPS6 ) or a mucolipidosis (ML 2 or ML 3) MPS 1 was ruled out as "Dylan was too pretty to have this one" however no testing for MPS1 has taken place all this is the only one that has not been ruled out by genetic testing.

Under Article 2 "Everyone has the right to life" Dylan was denied that right and under this provision we would like to order a full investigation into Dylan's Death

Under article 13 the family of Dylan O'Brien are entitled to an effective remedy to date they have not had this.