The Rex Shunt Procedure for Portal Hypertension

Hello Kelly!
Thank you for your encouraging post regarding your son Patrick!
From what I know for sure- the Rex-shunt procedure for PVT was firstly invented in Brussel, Belgium, in 1989. The author of that kind of shunt, Dr. Jean the Ville the Goyet, performed the first Rex-shunt and the operation was successful. In the early 90-es many doctors throughout the world started doing that more or less succsessfully.
I’m pretty convinced that by today Dr. R. Superina from Chicago is the most experienced and succsessful one among others who is perfoming Rex in children. As in our case, when Drs. in Germany told me that the Rex-shunt is definitely impossible in Sonya. Dr. Superina, after taking look at the disks with the images of Sonya’s investigations, resumed that he believes that Sonya should be a candidat for Rex.
I think, eventhough it was not his idea firstly, he knows his own professional secret how to do that, when others say “no”, he is sure he can do that. He is a very gifted Dr. from God.
We are trying to raise money right now to be able to come to Chicago for Rex, performed by Dr. Superina. Hopefully my daughter can survive until we will be ready to go.
Thank you again for the miraculous story of Patrick’s healing.
With the warmest regargs, Tatyana.

Hi Clint,

Not sure if you remember me? My son Aidan had the Rex shunt procedure in February. He passed soon after. I happened across a post on Facebook earlier today. I want to tell you how amazed and humbled I am at all the resources you and all of these amazing families have brought together. There is so much hope and support from everyone involved.
As always I offer my support and what small insight I can to those families facing the same road we did.
With sincere gratitude and support
Tracie Hodgson (Aidan’s mom)

hi clint,
my son 3 years old has portal vein thrombosis.i stay in delhi india.can you tell me the nearest and best centre for rex shunt.

Hi,
My daughter was recently diagnosed with portal hypertension and esophageal varices after a terrifying GI bleed. She has been suffering with enlarged spleen and vomiting for over 2 years but no one was able to figure out why until she bled recently. I have decided have the Rex Shunt procedure. I’m a little nervous because I live in NYC and she will be having surgery at Columbia Presbyterian and I can’t seem to find out any information about any kids having operation there. If anyone knows someone whose had operation here your input is greatly appreciated. Also, I can’t seem to find out how long before complete recovery. Any input or information would be great.

Hi Clint,
My case is very much similar to Tiffany’s. my son is 33 months old and was diagnosed with PVT at 14 months. he suffers from low platelets enlarged spleen and oesophagean varices that need to be banded every 4 months. we’ve had the CT scan results recently and it appears the clot is too extended into the liver for a ref shut. we are waiting for a decision from the doctors. we live in the republic of Ireland and London is the nearest center of excellence over here. We can only hope for the best possible outcome.

For Brandi,

My 4 year old son also has the same medical ailments as your child. We live in Phoenix and spent the first two years of his life being told he was constipated and had 10 enemas. He clearly had multiple visual symptoms. He was two when they finally performed an ultrasound and I was informed that my baby had been sick all along. Our state didn’t have a pediatric Hepatologist and was seen by G.I. but not in a positive course. The doctor just didn’t know the cause and wasn’t sure whether to band or not not.

I am a single mom of 5 with two genetically affected children and myself, diagnosis still unkown.. My baby finally was seen by a pediatric Hepatologist after FOUR years of suffering, because Arizona finally brought this specialty in. He was concerned for his Portal Hypertension among many other things, ordered many studies requiring anesthesia, but found out he was a candidate for a Rex Shunt. It took a while to organize, get insurance approval and fund the flight, but we are HERE right now.

Dr. Superina is a genius with an incredible gift of medical knowledge. He gave my baby life again. My baby vastly was deteriorating to the point walking was painful, he couldn’t bend over or sit upright. Now he’s running around like a bunny fully charged. his Varices should decompress and his very large spleen should reduce in size, he has a secondary spleen as well. his liver is enlarged with echotexture of cobblestone, but he had a great vein to implant his artery to to reroute his blood flow. My orange or green child is now pale skinned like me. His belly button is now an inny and his abdominal distention was GONE by the time he was in the PICU. hIs veins are visual still on his forehead and torso, but they are no longer bulging! He was in the hospital a week and we have been at the Kohl’s House for two months. Kohl’s house is connected to the hospital and for children to recover from any kind of transplant. it’s like Ronald house, but infection control is key here to protect the children. Kohl’s has private bathrooms in each room and a careful sterilization protocol. It’s 10 a night, but you won’t be turned away if you cannot pay. So, flying from Arizona and leaving 4 of my children behind to see Dr. Superina was the hardest, but BEST decision for my baby. There are several medical flight companies that offer FREE flights for medically needy children. so, free flights, great safe transplant home, outstanding hospital and an impeccable surgeon. No reason to wait to give your child the childhood they deserve. you may email me if you’d like.anytime. Oh, Dr. Superina travels the world to teach doctors this technique, because portal hypertension goes undiagnosed everywhere. He is in Israel now, what an amazing kind man.
Money isn’t an issue with all the help here at Children’s Memorial in Chicago, the free flights, free home to recover, food in the house and more love and support you could ever dream of. Oh, free laundry too… Don’t waste time, my baby deteriorated FAST, it was close and he is priceless.

blessings and prayers to yours,

Christine

4 years ago my son julien was diagnosed with portal vein thrombosis, esophageal, gastric and rectal varices and an enlarged spleen. it all started when he was just 4 months old, julien went into shock and became septic, he spent 7 days in icu at cincinnati children’s hospital first the doctors thought it was meningitis, then they thought it was his gall bladder then they did an ultrasound and discovered his thrombosis. the next four months we spent giving him meds through a pic line for an infection the doctors thought he had, my son had mri’s cat scans two endoscopy’s and one colonoscopy, and to top that off because of the varices in his lower abdomen he had one hernia removed, and all of this by the age of 9 months. One week after his first birthday i noticed blood in his stool, so we went back to the GI doctor for more tests, and that was when we discussed the rex shunt. DR. TIAO of cincinnati children’s hospital would be the one to perform this operation julien was just 16 months we had never heard of this type of operation before, but i was desperate and we did not know how much longer we could watch our son suffer, so we said yes, and to this day i thank god we did. He will be 5 years old in one month and will be starting kindergarten this fall, he is an active kid that loves to play video games.

Debbie,
Your story is amazing!! God Bless little Julien.
Heidi

Whoops! Drew is 7 now, and had the surgery 4 years ago.

So here I am again almost a year ago I posted here for the first time. Though Rylee does not feel pain from her enlarged spleen, varices, thrombocytopenia and portal hypertension, she is very limited to activity. We had a glimmer of hope thinking they could remove her spleen and cure her limitations, but the surgeon here said that the surgery could cause her more harm than good at this point in her life. He also indicated that if she needed a shunt surgery, that is risky and could also cause neurological issues which she already has due to her being a in utero stroke survivor. Her liver appears to be fine at this point. I am started to get very depressed and feel hopeless. I am very scared her spleen is going to rupture and that something else will happen with her having to live with these conditions. I have not talked to my husband about her condition since our visit witht he surgeon on Thursday, April 26. I am beyond petrified stil of any type of surgery and just have a lot of anxiety and horrible thoughts about what could happen. I am not sure what to do at this point, but I am sure that a second opinion should be done. Any thoughts or advise? Thanks