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