Meredith and her journey with Portal Hypertension

Update 04/02/2023

Meredith has been scheduled for the Rex Shunt surgery in Chicago on June 28. We will be traveling as a family, and Meredith is expected to have to stay there for a month, up to 6 weeks while recovering. We’ll also be traveling back for post op visits. This will be a long trip with Trevor needing to take off work, any help is appreciated to help us pay our bills during this time!

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Our daughter Meredith (5) threw up blood in December 2022 while battling the flu. I took her to the ER, where she got a lot of tests done , and her condition worsened. After being transported to CHOP and admitted to the PICU and speaking to liver specialists, she was diagnosed with “Non-Cirrhotic Portal Hypertension” with Esophageal Varices. Basically, the portal vein going into her liver is backed up/clotted and blood can’t flow through. Her body has created other vein branching in an attempt to go around the problem, but it is causing other veins in her body to be abnormally large. These “varices” in her esophagus are especially concerning, because that is what burst and caused her GI bleed and for her to throw up blood.

Meredith was a 29 week preemie, and the liver specialists say it is possible that when she was born, the umbilical line put in caused a blood clot in her portal vein. She has essentially been living with this health condition her whole life, and we did not know. She had one health scare around Christmas 2021 where her spleen was found to be enlarged and bloodwork abnormal, and after ruling out Leukemia, her bloodwork improved and Drs didn’t know where to go from there. She went a year until throwing up blood, and it wasn’t until getting a CT done they found out her diagnosis. With Portal Hypertension, it makes sense that her spleen is enlarged and her bloodwork isn’t normal.

Since her diagnosis, we are working with a great liver team at CHOP who are monitoring her. She has had 2 endoscopies, and her dangerous looking varices have been treated with medicine, which is only a temporary solution. She just had a liver biopsy and more imaging done to prepare for further management. The risk currently is another varice bursting and causing another GI bleed, which is life threatening.

We are currently consulting the expert of her condition, a Dr in Chicago. It looks very likely that we will be traveling to Chicago in the near future for Meredith to undergo major surgery, to hopefully offer a fix to her Portal Hypertension. There are a few different methods Drs use, and sometimes they can’t tell which method will work until they go into surgery and see the vasculature in person.

We are asking for help with funds to pay Meredith’s medical bills, as well as travel to and from Chicago for surgery and follow up visits. We are overwhelmed with her diagnosis and hope to not have to stress about the financial aspect of it. Any help is appreciated!