Helpless Reality: Finding Answers for My Son’s Rare Portal Hypertension

April 21, 2015

We never felt so helpless as we did back in July 2011, when Patrick began his given journey at a year old.

As a baby, we never realized Patrick had any signs of being sick…we thought he had been very healthy. Looking back at pictures of a beach trip a few weeks before in June, we noticed he was really pale and just seemed like he had had some ‘bug’ but we never knew that we were about to travel down a road that we didn’t choose….

We got back from the beach and noticed he seemed to be feeling cruddy. Maybe the flu? There were no real complaints of pain, and then the fevers began and remained steady at 102/103. We gave him some medicine and then his fever spiked to 105 and blood counts went into ‘distress.’ Patrick needed a blood transfusion and was subjected to a bone marrow test, ultrasounds, and numerous other immunological tests. While we were at the children’s hospital we had been through some extremely low lows but through lots of prayer had seen God’s hand close doors to things we were so frightened to imagine. I literally felt like someone came up behind me and swept my legs out up from under me…from that point on I do not remember breathing.

For the next three years, Patrick had remained so pale and beaten with monthly recurrent fevers, low platelets, diarrhea, and enlarged spleen. There was no way to prepare for the brick walls over and over again; or going down paths that only led to more dead ends. So many times we had hopes of an answer of what was going on with Patrick only to have those come crashing down on us.

Little did we know that we would end up visiting more than 33 doctors and specialists and travel over 3000 miles. And then there was a diagnosis of portal hypertension/ portal vein thrombosis, and a lot of questions. Basically, he has a blood clot that completely blocks the blood flow to his liver, causing it to go back into his spleen, stomach, and intestines. This has caused Patrick’s spleen to become enlarged affecting many of his blood counts. At this point, Patrick has received endoscopy treatments, and bandings in his esophagus. These can be very serious if they rupture. There is no ‘cure’ for portal hypertension but there is the Meso-Rex Shunt and is Patrick’s best chance at a ‘cure’ – the best chance we have to heal him and give him a normal childhood. Patrick also suffers from recurrent high fevers, a heart murmur, and Factor V Leiden. I never thought we would get to this point…a point of excitement but, at the same time, wanting to throw up. As a parent, don’t ever give up on your child…you are their best advocate, and sadly oftentimes, the only advocate. This is very daunting to think about and even deflating, at times, but don’t ever give up. There were times I felt like there were no more roads and considered doing what some doctors had said…”just wait and see what happens”…but I couldn’t sit back. Just when I thought I didn’t have any more options I thought I would jut grasp at one more straw…and thankfully I got a tug back with a hope of getting Patrick a better quality of life. This has been a very long season for us and was not a road I would have chosen but feel so blessed to have had God choose me to be Patrick’s mommy and take him down this road.

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