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Transplant Angels

Transplants saves lifes but do you know it can take lives as well

As you all know terran underwent a multiviseral transplant on Sept 12, 2002 of his stomach and pancrease and small intestine so this topic is quite dear to me I thought I would take a moment to address this topic Teran also underwent a second transplant Sept 3, 2006 he died Sept 24 due to complications its with this in mind this page is created I want you to think long and hard there are many other options available to you all is not lost you have lots of decsions to make but the final decsion will be yours you will walk in your shoes if your child dies like mine did i never for a second thought i would lose my terran but i did and now you must think in your mind when you see those pictures of happy children they dont show you the ones that die they dont show you the ones that dont do well out of 100 chldren who have transplant 50 will die only a few will live past the first year even less the second year terran was lucky the first time but it was an uphill battle to keep him alive so please parent think long and hard is this what I want for my child and can I live with the conseqences after all the doctors nurses etc will all go one with life when yours is distroyed

First in the treatment of motility disorders like Hirschsprungs disease and pseudo obstruction these children have a unique set of problems that can complicate transplants as Gennardo Selvaggi told us in his article I want to emphasis on the fact that Transplants do not cure they are a treatment and may or may not work, you as a parent need to see all options before going down this route unless all other avenues have been exhusted.

Since bowel transplants are now more feasable more centers are preforming them when terran had his transplant our options were limited but now there are even living related transplants of the small intestine and liver so there is even more options for those in need of a transplant. Further more there is a long wait involved in transplants of all types due to the limited donor pool making the fact that living related donors of both liver and small bowel more attractive. But dont be fooled as i said before transplants do not cure especially in the case of pseudo obstruction and Hirschsprung's disease. As in terrans case his course has been complicated by many things that are typical of a transplant child.

Kim Robinstein

President and Founder of Guardian Society

Proud Mom to Terran 2 Modified Multivseral Transplant

In Miami Florida who sadly Died Sept 24 in of complications after his second transplant

http://www.terranstransplant.com

Click on her picture to go to her site by her mom

Stormy died of complications after undergoing multiviserl Transplant

Dear Parents

We sought the transplant option because terran had such a hard time with being tpn dependant and reccurrant line infections when he was listed he still had venous access but it was dwindling. Plus the fact that terran got so very sick with line infections we feared we would lose him. and of course terran was lucky in one aspect we sought transplant before terrans liver went bad so he did not have to have the liver but other problems have developed since transplant due to him now being so immunsuppressed.

On transplant centers in general they are all good some better than most but all are quite good all have their good points and bad points you as a parent must be comfortable with your center you chose as you will be required to return to that center for the rest of your childs life. One problem all the centers seem to have right now is too many patients and too little staff it is vital that a center be able to follow the child once the transplant has taken place but it is also the parents who have a vital key in this as well by learning all you can on the aspects of transplant you can alert the team of concerns I know with terran there have been many times his doctors and I have been concerned about something we found say in blood work or biopsys so we can alert his center of a possble problem before it becomes a crisis.

If you decide or your doctors have told you that your child may need or does need a transplant talk to your doctors read all you can on the subject research the center of your chosing for typical complications and take a tour if possible talk to other parents who have been treated at that center. make sure your comfortable with your decsion after all no one can walk in your shoes.

and finaly know that all centers like all hospitals have problems but if you are comfortable with the center you chose instead of complaining try to help the center get better. MOst of all be an advocate for your child.

Kim Robinstein

President and Founder of Guardian Society

Proud Mom to Terran 2 Modified Multivseral Transplant

In Miami Florida who sadly Died Sept 24 in of complications after his second transplant

http://www.terranstransplant.com

Click on picture to go to her pages

Sierra Meyers Died of Complications after undergoing multiviseral tranplant

Terrans Treasure shadow box

is all i have left of him this and my many memories

In loving Memory of Terran Robinstein

one of the children they want to forget but we will

never forget them