The Rex Shunt Procedure for Portal Hypertension

The Rex Shunt procedure is a relatively new treatment procedure for portal hypertension that has been performed on children with positive results.  According to what I have learned, there are now over 90+ children in North America who have had the operation.

The Rex Shunt procedure has primarily been performed at Children’s Memorial Hospital in Chicago, Illinois by Dr. Riccardo Superina.   (There maybe a few other places in the world where this procedure is being performed, but I was unable to glean that information at this time).  If you are aware of any other locations please feel free to post your comments below.

Dr. Superina explains the procedure in the video below …

What is the Rex Shunt Procedure?

On the Facebook blog I subscribe to,  a fellow member had asked Dr. Superina directly whether or not the procedure could be performed on adults, and this was his reply …

“There is no reason that it cannot be applied to adults, and we would be happy …to hear their cases if they wished to send case summaries along and recommend further investigation or action.”

If you wish to send a case summary to Dr. Superina his mailing address is:

Riccardo Superina, MD

2300 Children’s Plaza, Box 57

Chicago, IL 60614-3363

Considering my particular case, the verdict is still out as to whether doctors would even consider a procedure such as this, or for that matter any kind of operation due to my underlying clotting condition?   For you though, or possibly someone you know maybe this procedure is something worth pursuing?

I had the privilege yesterday of meeting (via the web) Shelly Hart whose daughter Aubree had the Rex Shunt procedure performed by Dr. Superina 2 1/2 years ago.  Shelly has granted me permission to post her blog and you may view it by clicking here:  http://www.hartgirlies.blogspot.com/ Please click on Aubree’s health updates to view her personal journey!  Thank you Shelly!

If you have a story to share regarding the Rex Shunt procedure or for that matter any other procedure your post is most welcome here!

See a case report of the Rex Shunt Procedure for Adults.

84 thoughts on “The Rex Shunt Procedure for Portal Hypertension

  1. Amanda

    My daughter had the operation 3 years ago and I would be happy to reassure any parent who has concerns. Her operation was performed at Birmingham children’s Hospital in England.

    Reply
    1. Clint Post author

      Hello Amanda,

      Your comments are appreciated! It’s always good to hear success stories, and especially ones from your part of the world! I was wondering though, for the sake of others if you could provide the name of the doctor who performed the operation, and also if you know of how many Rex Shunt procedures have been performed at the Hospital? How old was your daughter when she had the operation? Thanks!

      Reply
  2. April

    We have recently traveled to Children’s in Cincinatti where we saw Dr. Ya Zigi. My four year old son will have the Rex Shunt, but we were told that because he hasn’t had a bleed yet (from the varices) we have to wait. She told us they are trying to get it passed so that the procedure can be done before a bleed, but after doing some research from what I understand it can be done after diagnosis, before a bleed. If anyone has any information on this it would help. Thanks!

    Reply
  3. Tracie Hodgson

    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)

    Reply
    1. Clint Post author

      Hi Tracie,

      Thank you for your kind comments. I certainly DO remember you. How are you doing?

      By no means is your support small as you have walked through a most difficult journey and by far would have an understanding greater than most. I appreciate your support – if even coming on the site to comment in this manner. From what I have learned so far is that people with portal hypertension can develop additional complications, and in the case of Aiden this was not an exception.

      You are most welcome to comment anytime you feel a parent of a child or a person with Portal Hypetension could use an empathetic word.

      Kindest regards,

      Clint

      Reply
  4. dr pankaj dabas

    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.

    Reply
    1. Clint Post author

      Hello,

      Thanks for your inquiry. Sorry to hear of your son’s PVT. I only am familiar with 2 places closest to India on the European continent that may do the procedure. For doctor’s in North America please refer to this link from my site: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/
      (I would recommend you try to get in touch with Dr. Superina at Children’s Memorial Hospital in Chicago (see:http://www.childrensmemorial.org/findadoc/bios.aspx?id=993), or you may try Dr. Jean Emond in New York see: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery

      Here is the contact information for the European Hospitals:

      Birmingham Childrens Hospital
      St Chad’s Queensway
      Birmingham, West Midlands B4 6NH, United Kingdom
      Phone 0121 333 9999

      *Sorry but I do not have a specialists name for this hospital as this information was only passed on to me by a subscriber last week. If you have a name – please let me know.

      France

      Hôpital Bicêtre

      78 rue du Général Leclerc
      94270 Le Kremlin-Bicêtre, France
      01 45 21 21 21

      Let me know what you find out?

      All the best,

      Clint

      Reply
  5. Tiffany Knight

    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.

    Reply
    1. Clint Post author

      Hi Tiffany,

      Thanks for your post. Sorry to hear of your daughter’s situation. In answer to your question regarding someone in NYC doing the Rex Shunt, I can’t recommend anyone off hand as there only seems to be a few worldwide, however I will suggest you try to get in touch with dr. Jean Emond in New York as he seems to have a good handle on things of this nature. Here is a direct link from my site which includes all the docs I know “in the know” concerning The Rex Shunt: http://www.portal-hypertension.com/2011/03/17/rex-shunt-procedure-specialist-list/

      Also … You may want to check out this Facebook site where many parents of kids who have had the Rex Shunt dialogue with others. Portal Vein Thrombosis & Portal Hypertension in Children and Adults. (sorry I don’t have the direct link handy but just search on Facebook if you have an account). Hope this helps? Please keep me posted if you find out anything.

      Best, Clint

      Reply
  6. Sara

    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.

    Reply
    1. Clint Post author

      Sara,

      Thank you also for your post. As for most people who blog on here, I have to admit I have extra emphathy for the kids with this condition as opposed to adults. That being said though, there seems to be a greater resiliency with kids and just a few more options if complications allow. As for your son’s case “I pray” it to be true! If a good solution is to be found for your son, it would be great to know as I don’t have much information on doctor’s I can suggest to other who reside in the UK or your particular part of the world. If anything please let me know what happens. Staying true to my word because I am a person of faith, I will pray for the best possible outcome for your son, Tiffany’s daughter and all the children who are dealing with this most disconcerting condition! One more thing … are you going dealing with doctor’s at Birmingham Childrens Hospital? Best, Clint

      Reply
  7. christine Bauler

    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

    Reply
    1. Clint Post author

      Christine,

      Lot’s of great information you have shared here. Thank you! More happy though to hear of your little guy’s success with Dr. Superina! It has been several months since Brandi commented on this blog, so I do hope she sees this? If she does or does not see it, many others will benefit from your detailed information!

      Blessings,
      Clint

      Reply

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