Does your child need a bowel transplant

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Dear Parents

Please read these pages well and think long and hard before embarking on this new journy. This surgery may extend life but again it may end your child's life as well. Some children who undergo this surgery do ok but suffer many complcations if they live some do well initialy but over time have problems as terran did who lived 4 years after his first transplant while i would not trade those 4 years for anything they were filled with joy and saddness. I do regret the second while I wish I had had a crystal ball and could have seen what would have happened in his second transplant would i have done things different if i had known it would cost him his life or keep him on tpn and work harder I will never know sadly terran lost his life and I can not go back and do things over and theres lots to consider not just money wise but can your family handle all that entails a transplant its lots of hard work and lots of sacrafice with this in mind and you chose to go forward with this surgery know all you can know learn all you can learn so you will not later on regret your decsion. You may find later that your child could have survived on TPN and grew a few more years the bowel can grow and you can live on as little as 10 cm of bowel its not easy tpn is full of complications itself but you need to know all there is before you let your child undergo this surgery with this in mind I hope and pray you do not walk in my shoes i hope and pray that your child soars like never before.


with much love and compassion Kim Robinstein mother to the most amazing child in the world who lost his life on sept 24 20 days after undergoing his second transplant in Miami Florida

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INDICATIONS FOR INTESTINAL TRANSPLANT

Intestinal transplantation is now a therapy for patients with irreversible intestinal failure. Intestinal failure is defined as the inability of the intestine to absorb and process nutrition given by mouth or feeding tube. It can be divided into two major classes: intestinal failure due to congenital absence or surgical removal of long segments of the intestine (short gut syndrome), or intestinal failure due to a functional inability of the intestine. The latter is the cause of intestinal failure in patients with intestinal pseudo-obstruction or total Hirschsprung disease (aganglionosis). In this disease, the intestine has normal length, but it can not move food distally to be absorbed and digested. So, even if there is no lack of length, there is a lack of function of the bowel. When patients are diagnosed with intestinal failure, they have often had multiple surgeries, they have had some of their intestines removed, and most times they have a part of the intestine brought out to the skin (ostomy). Nutrition has to be given through the veins, in form of parenteral nutrition (TPN or HAL, hyperalimentation). This is a good way of giving calories and nutrition to those who cannot get any food by mouth or feeding tube, but it has many potential complications. The most important complications of TPN are: line infection, liver failure and loss of vein access for the line. When these complications become life-threatening, TPN has failed and this is when intestinal transplant is indicated. Therefore, intestinal transplant is indicated when the liver function worsens, when a patient develops multiple episodes of line infection that require hospitalization, and when more than half of the veins available for line placement are clotted off and cannot be used any longer. Another, less common, indication for intestinal transplant is if a patient has intractable diarrhea, requiring continuous intravenous hydration and frequent admissions to the hospital for dehydration episodes. Patients with motility disorders have been receiving successful intestinal transplantation for many years now, but they present a specific set of complicating factors, which have to be considered before and after transplant. First of all, the disease is often extended to other organs (bladder, for instance) or to other parts of the intestine like the esophagus and rectum, which cannot be transplanted. This is important because transplantation will not cure motility disorders in these organs. For example, a patient with Hirschsprung disease can have a successful intestinal transplant, but when time comes to close the stoma and reconnect the transplant intestine to the native rectum, functional obstruction may happen again. In addition, if there were esophageal or stomach motility problems, after isolated intestinal transplant, these problems will not disappear. These are things that transplant surgeons, parents and patients need to discuss before surgery, so that they can plan the type of transplant or if there will be a need for more surgeries after transplant. Generally speaking, intestinal transplantation can be divided into different categories: first of all it is important to decide if the patient needs also a liver transplant or not. If TPN has caused irreversible liver failure, then in addition to the intestine the patient will need also a liver transplant. Different parts of the intestine can be transplanted, and the following are the most commonly used type of surgeries, with the description of the organs transplanted.


Gennaro Selvaggi, M.D.
Assistant Professor of Clinical Surgery
Division of Liver and GI Transplantation



University of Miami School of Medicine





Click on carters picture to read of his story
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Carter Living related bowel 3/19/01-8/03/06

Dear Parents



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
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Stormy died of complications after undergoing multiviserl Transplant

click on his picture to go to his site
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Othello smith who died of complications after his multiviseral Transplant

Isolated intestine: Small bowel (jejunum and ileum), sometimes a segment of large bowel (colon).

Liver and intestine: Small bowel (jejunum and ileum), sometimes a segment of large bowel (colon) plus liver transplant. The duodenum and pancreas can be included in this type of transplant.

Multivisceral transplant: Stomach, duodenum, pancreas, small bowel (jejunum and ileum), sometimes a segment of large bowel (colon) and liver transplant all together in one block. In some transplant centers, the spleen is also transplanted together with all the other organs.

Modified multivisceral transplant: Stomach, duodenum, pancreas, small bowel (jejunum and ileum), sometimes a segment of large bowel (colon) all together in one block without the liver. In some transplant centers, the spleen is also transplanted together with all the other organs.



Because each patient is different and has its own specific disease and history, it is essential that the patients and their families discuss with the transplant surgeon which operation is best indicated for them.



Gennaro Selvaggi, M.D.

Assistant Professor of Clinical Surgery

Division of Liver and GI Transplantation

University of Miami School of Medicine

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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
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Sierra Meyers Died of Complications after undergoing multiviseral tranplant