Jan 11, 2018 Latest post:
Jan 15, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Yu Tian came home in May of 2016 and has been a ray of light in our lives since. He is smart and sarcastic and has a personality which is 10 times bigger than his little body! TT approaches everything with joy and has such a sense of fun- he makes every day an adventure! He is sweet and so caring- this child who knows what it's like to have literally nothing is more than willing to give anyone anything he has to brighten their day. TT has filled our hearts and family. We are so very blessed to have him as our son.
TT was born with Noonan Syndrome which is a genetic disorder that affects many body systems including his heart. When TT came home, he was in congestive heart failure, he had four atrial septal defects (holes in the muscle which separates the two top chambers of his heart), and a thickening of the heart muscle in the left ventricle (hypertrophic cardiomyopathy).
We have been so fortunate to connect with the wonderful team of doctors at the U of MN Masonic Children's Hospital. They were able to resolve the heart failure with medications and close the septal defects through a cardiac catheterization procedure. Tian Tian then was able to have a normal year with us where we have watched him flourish.
TT's disease was considered stable until a normal monitoring appointment in June of 2017 showed that the thickened muscle had doubled in size. TT continued to feel well until this past fall, when he began to show signs of exercise intolerance. A cardiac cath in December showed that the muscle had grown to the point of obstruction- it is so thick that blood cannot flow properly into or out of his heart. We were given a devastating prognosis that 95% of children in his position die within 5 years.
Again, our amazing team at the U of MN stepped up and continue to fight for our amazing boy. Dr. Hiremath, our cardiologist, fought for TT and came up with options. He too would simply not accept that prognosis for this wonderful child. Through Dr. Hiremath, we met with the heart transplant team at the U of MN and began conversations about transplant down the line. We also connected with a surgeon at Mayo Clinic who is able to perform a surgery to thin the muscle in the ventricle- he was the only surgeon in MN who is able to do the type of approach TT's heart needs. We are hopeful that this surgery will buy TT years of feeling well and growth before he needs a new heart.