95 thoughts on “The Rex Shunt Procedure for Portal Hypertension”

1. Tracie January 30, 2011 at 10:36 am

   Hello,
   I’m suprised to find this site as we have been dealing with complications from PVT since March of 2010. I have yet to speak with anyone else who has/had a child or loved one undergo a Rex shunt. My 3yr old son will be having the procedure on Feb. 7th 2011. My son also has Pulmonary hypertention due to the pvt. and we are told his case is rare. My husband and I have felt like a bit of a science experiment for the doctors in Utah as they have never treated a patient with Aidan’s diagnosis. If there is anyone out there with suggestions, comments, what have you’s, I would love the chance to speak with you.. Thank you so much Clint for getting this started. It’s fantastic to know we are not alone, although my heart goes out to anyone in our same situation.

   Tracie

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   1. Clint Post authorJanuary 30, 2011 at 3:46 pm

      Hi Tracie,

      Thanks for your comments. Sorry to hear of your son’s situation, but glad doctor’s are proceeding with a Rex Shunt for him. Is Dr. Superina doing the operation at Children’s Hospital in Chicago, or is someone else doing performing it? With your permission I would glady put you in touch with a few parent’s of kids who have had the operation already. I have your email address on this blog and could forward that on if you are okay with that? Just let me know and I will get the ball rolling. On a side note … I was aware of the fact that portal hypertension can cause pulmonary hypertension, but with a Rex Shunt I would assume one can resolve the other. I have been screened a number of times for pulmonary hypertension, and at some point I should post an article on this subject so that others are also aware. Take care, Clint

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2. Tracie January 31, 2011 at 1:17 am

   Hi Clint,
   Dr. Superina is preforming the surgery in Chicago. we live in Utah so it will be quite a trip I’m sure! I would love to have you pass along my email to other parents. I’m so happy to have found this site, it makes me feel a little less insane and alone! I would love to read any related articles you find regaurding the link between PAH and PVT. Our hope is the surgery will help resolve the PAH but there are no gaurantees. At the least we hope it will stop any further damage to Aidan’s lungs and reduce his need for Oxygen.
   Thank you again for your help and your insight.
   Tracie

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   1. Clint Post authorJanuary 31, 2011 at 2:35 am

      Hi Tracie, I sent a request to 3 Mom’s whose kid’s have had the Rex Shunt performed on them. Hopefully you will hear from one or more of them in short order? On the subject of articles the link between PAH and PVT I do not have anything at the moment. On a personal note I have been tested for Pulmonary Hypertension on 2 separate occasions, but the tests were returned negative. Since the inception of my blog just over a year ago, I have not heard from anyone who has both PAH and PVT, but I know it is a definite concern for my doctors. Let’s hope and pray that Aiden will respond to the surgery and the complications will be eradicated completely! Have a great week!

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3. Tracy Fry February 6, 2011 at 1:21 am

   Our daughter had a REX Shunt in 2001 at Children’s Memorial, Dr. Superina’s 20th! She was born with Pulmonary Artresia, VSD, ASD and a PDA (all heart defects) and had two open heart surgeries before undergoing the REX. She also has arthritis in her hands (large knuckles and oddly bent fingers and toes, they almost look as though they have been broken and never repaired) and has had extensive orthodontia work due to an extremely narrow palet. We have had numerous genetic test done to find a “cause” but everything has come back negative. While she had her heart surgery at Riley Children’s Hospital in Indianapolis, they were clueless what to do with the portal vein thrombosis and knew nothing of the REX Shunt. After having a life thereatening esophigial bleed, the liver doctor at Riley basically told us to take her home and hope she didn’t bleed out the next time!! The night she was discharged I sat in my livingroom flipping through channels praying to God to bring us a miracle, after all she had survived almost sure death at birth and two subsequent open heart surgeries, when I stopped on WGN News Chicago – to listen to this soft spoken doctor (Dr. Superina) describe this amazing new procedure he was doing – you got it the REX Shunt! Within a week our daughter was being tested at Children’s Memorial and at 2 1/2 years old became the 20th child to have the REX!!!! Today she is a thriving almost teenager. She could be a poster child for the REX Shunt. A few days in Intensive Care a few more on the hep floor and ultrasounds, blood work and CAT Scans for the first seven years all with great results! Dr. Superina saved our daughter there is no doubt in my mind!

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   1. Clint Post authorFebruary 6, 2011 at 2:20 pm

      Thank you for relaying this story! What a tremendous story of hope! I never imagined the response I would receive on this blog, let alone the reaction I’ve received to date regarding the Rex Shunt procedure for children. The side effects of this condition are hard enough to deal with from an adult perspective, but when it comes to children it intensifies the situation all the more. Children are our future, and when breakthroughs such as the Rex Shunt procedure are showing success – we are all elated and it gives everyone hope. Dr. Superina truly has saved many a child’s life, and if from what I have heard the number’s are now just over 150. I also know that there are a couple of other doctor’s in the world who have had success with the procedure and no doubt they have consulted with Dr. Superina in that regard. Thanks again for sharing!

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4. Dra. Leticia Bilbao February 24, 2011 at 11:20 am

   Hi, I am a pedatric gastroenterologist and I know Dr. Ricardo Chavez Vargas has performed at least 3 Rex Shunt in 7 montths old, 2 and 4 years old children with success in Mexico City. The children are now my patients and they are all doing great.

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   1. Clint Post authorFebruary 24, 2011 at 9:51 pm

      Hello Dr. Bilbao,
      Thank you so much for your comments! The Rex Shunt procedure has been a positive breakthrough for Portal Hypertension in the lives of children. A high number of responses to the Rex Shunt procedure on this site comes from parents of children who have had the operation, or their child has been scheduled for the operation in the near future. I am very glad that there are other places besides the US and the United Kingdom where children can have this operation. Thanks to you I can now add Mexico to the list! Is there a direct link to the hospital where you and Dr. Vargas practise, and could I have permission to post that on this blog for others to see?

      Thanks again for your very important work!

      Clint

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   2. Clint Post authorMarch 15, 2011 at 12:19 pm

      Thank you Amy for your valuable input! I know your comments will be helpful and encouraging to others!
      Bless you in your journey with your son’s health! Clint

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5. Dra. Leticia Bilbao February 25, 2011 at 12:00 pm

   Thank you for you enthusiastic response!
   Dr. Ricardo Chavez-Vargas and myself work in 3 different hospitals, one of them from Governmental Institution, so it might be better if you just post our emails.
   Dr Ricardo Chavez-Vargas, is also Chief of Pedaitric Transplants at the IMSS hospital CMN La Raza, and in charge liver transplant program that includes cadaveric and living donor transplants: chavarg@hotmail.com
   I work at the same places as pediatric gastroenterologist in the liver transplant programs. leticiabc@yahoo.com
   Thank you again and I hope we can get to meet Dr. Superina and you some time!

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   1. Clint Post authorFebruary 27, 2011 at 12:29 pm

      Dear Dr. Bilbao,

      I am grateful for your response also. Although there does not seem to be much they can do for me regarding my condition, I am pleased that there have been positive breakthroughs for children. I have never met Dr. Superina personally, it would be an honor to meet him as it would meeting you also! In my eyes you are heroes – especially when dealing with the lives of children with Portal Hypertension.

      On a side note, do you know or have you heard about Dr. Guadalupe Garcia-Tsao? She earned her medical degree from the Universidad Nacional Autónoma de México in Mexico City in Mexico City. She completed her internal medicine residency and gastroenterology fellowship at the Instituto Nacional de la Nutrición in Mexico City. Anyways I have not met her personally, but my gastroenterologist Dr. Puneeta Tandon here in Edmonton, Canada has been mentored by her just last year as she is a professor at Yale Medical School in New Haven, Connecticut in the US. See link for more details on her credentials: http://www.aasld.org/aboutus/leadership/Pages/GarciaTsao.aspx

      At some point in this blog I hope to develop a section where people can find specialists around the world who deal with Portal Hypertension and its complications. Besides Dr. Superina in the US, we now can add yourself and Dr. Chavez-Vargas to that list. I know there are other doctors here in Canada that know of and utilize the expertize of Dr. Superina, but if we can build that list, in other parts of the world – that would be super. Although this condition does not seem to be that common, at the very least people can hopefully find answers and the doctors they really need to overcome the obstacles of this most serious condition.

      Thank you again for your reply! All the best in your future endeavours!

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6. Lenny March 3, 2011 at 8:12 am

   Hi ,
   My daughter is 22 months old she have a PVT from her first day of life cause from catheter in her ambilical cord since she was 3 months premature , she had her first bleeding 5 months ago they did a sclerotherapy but it not seems helping to her verecic to go away noe they are planing for a shunt surgey .Im very scared and dont know what to do because we leave in Canada, ON, Sick Kids Hospital is the only place can give me consultation ,
   Do any one here know how can I have consultation from DR Supernia By Email .
   And also if there id any one who his child had this sutgery done at 22-24 months old and can tell a bit about the surgery and the recovery from it Ill be very greatfull .
   Thank you so much for your help .

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   1. Clint Post authorMarch 3, 2011 at 2:04 pm

      Hi Lenny,

      Thanks for your comments. Very sorry to learn of your little girls condition, and don’t blame you for looking elsewhere at this point! Sick Kids Hospital has consulted with Dr. Superina, or so I thought, and I can’t remember the name of the surgeon’s name who has been in dialogue with Dr. Superina? Hopefully you can find out something soon. Here is the contact information for Children’s Memorial Hospital where Dr. Superina practises:

      2300 Children’s Plaza
      (707 W. Fullerton Ave.)
      Chicago, IL 60614-3363
      Call 1.800.543.7362 (1.800.KIDS DOC)
      Phone 773.880.4000

      I am a Canadian and I know of a few other children here in Canada who have had this surgery. I would be happy to put you in touch with some of their parents but would need your permission to forward your email (which is only visible to me as the creator of this blog). Unfortunately I do not have Dr. Superina’s email address, but the hospital may share that with you if you ask.

      Please keep me posted as to what you find out – it may be helpful to someone else?

      Take care,
      Clint

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7. Jamie March 3, 2011 at 9:15 pm

   My son (21 months old) was diagnosed with PVT about a year ago. We just moved to Iowa and transfered care to the University of Iowa in Iowa City. We met with a pediatric surgeon Dr. Graeme John Pitcher there today. He wants to do the Rex Shunt on our son so that is another Dr in the US performing this surgery. Just thought I’d let anyone looking for a doctor know. Seemed like a great doctor with vast knowledge of PVT’s and the Rex Shunt procedure. We had never heard of it until today. Our Doctors in Denver, Colorado (where we used to live) told us that we just needed to wait and see what was to come. Dr Pitcher was so optamistic that he could actually “fix” our little man!

   Jamie

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   1. Clint Post authorMarch 3, 2011 at 10:32 pm

      This is fantastic news! I am hoping other parents in the same situation will see this and seek out Dr. Pitcher as yet another surgeon who can perform this life saving procedure for their own child! I know Dr. Superina in Chicago has consulted with other doctors regarding the Rex Shunt procedure and quite possibly Dr. Pitcher knows of him?
      Jamie … would you mind sending an update as to how everything went? I know many including myself would love to hear your story. All the best, Clint

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