It does not lessen the feeling of loss and it does not bring our baby back to us, but it is some comfort that it looks like the EE country where Jacob/Henry was institutionalized was trying to do the right thing--- but by doing that probably cost our precious little one his life.
We contacted an oprhan outreach NGO in this country to see if they could investigate Jacob/Henry's death.
Here is their report:
As I asked the State Agency for Child Protection to inform me about the reasons for the death of Jacob/Henry they performed a check and replied to me two days ago. Currently the Agency implements a big project for deinstitutionalisation of the all children with disabilities from the instititutions. The needs assessment of all children was implemented in October 2010 and for certain children special measures were taken as they were at risk to die.
So the assessment estimated that Jacob/Henry is at risk and special menu and supervision was prescribed for him. There were obviously problems with the feeding of this child as he was hospitlised at Christmas 2010 for pneumonia which often happens with the bedridden children because they are not fed properly and food enters the lungs and stays there as they do not move.
But in April 2011,Jacob/Henry was hospitalized because some stomach problems were diagnosed and the medical doctors decided to operate him. After the operation they started feeding him with a tube and not through the mouth. According to the documents air entered the stomach and this worsened the condition of the child and he died on 5 May 2011 at midnight. The official reason for the death is brain and lungs swelling as well as pneumonia.
According to the Agency a course for feeding and intensive interaction took place in the institution in April 2011 and Jacob/Henry was included in the list of the children who would be fed in a special way but the real work with him did not start as he was hospitalized.
It sounds very much like he could have been suffering from Re-feeding Syndrome.
Mary has a medical background and will be posting more specifics soon on her site.
So sad----so very sad again today.