What Happened to "Jacob/Henry"

Two posts in one evening!

After Jacob/Henry died, I was online looking for some answers, and I honestly can't remember how or where I found some NGO that works in his EE country. I emailed them about him, and they got back to me right away with some information, mostly about equipment (wheelchairs and the like) that can be rented for children in orphanages and institutions. They also said they would see if they could find out any information about his death.
Today, got another email from them:

Dear Mary,

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 hospitalised 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. The informed consent for the operation was taken from the father of the child. So after the father was informed about the death he did not want to arrange the funeral himself and the municipality arranged it. The funeral took place in the city graveyard in (Jacob/Henry's city of residence).

 

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 hospitalised.

From what I can gather from this, it seems that Jacob/Henry probably died from "refeeding" syndrome. 

Now I'm on a mission. 

Refeeding syndrome can occur when a person goes through a period of starvation...the period can be as short as 5 days...or as long as...well, I don't even want to go there. 

Many changes happen in the body when it is starved, and reversing these changes must be done very carefully, slowly, and while watching fluid and electrolyte balances. 

One of these days, I'll really learn how to embed links but until then, google "refeeding syndrome" for more information, and also see www.carringtonscourage.blogspot.com for another little one who went through this...only her outcome, thankfully, was much better. However, Ms. Carrington came dangerously close to Jacob/Henry's fate. 

While waiting to travel, I am going to gather as much data as I can about refeeding syndrome, its causes, prevention and treatment, and hopefully will have a chance to share this information with the appropriate people so that this tragedy can be avoided in the future.

Mary