Dear Friends,

Thank you for all your years of support for our Striver. This is a brief update on where his health is now.

Striver just started 3rd grade. He is thriving academically but is struggling socially. AuDHD (Autism with ADHD) can give a kid superpower. We are in awe of Striver’s brain’s unique operating system. However, he masks all day, and deals with constant pressure to operate as a neurotypical child and to feel truly understood and accepted. He suffers from rejection sensitivity (often called RSD), which is correlated with AuDHD. His brain experiences things like being corrected, left out, teased, losing, or even just thinking someone is upset (by a facial expression or voice) as a huge rejection. This often comes out as anger, defensiveness, shutting down, and what we see most in our boy – pushing people away and being unapproachable/unfriendly to “protect himself”. We are trying everything we can to interrupt this loop. It is something we deal with every day, and it is very stressful for him and sad for us. 

This may seem unrelated to our heart journey, but there is a real, well-documented association between complex congenital heart disease—particularly single-ventricle/Fontan physiology—and neurodevelopmental differences including ADHD and autism-spectrum traits/ASD. The American Heart Association (AHA) specifically identifies executive dysfunction, ADHD, and problems with social cognition as recognized neurodevelopmental issues. The AHA notes that adolescents with Fontan circulation show more autism-like behaviors and difficulties with social cognition, including interpreting emotions, social situations and relationships.

As far as Striver’s physical health, our last CaringBridge posts are up to date. To summarize, Striver had his first ever elastography in January to measure the stiffness and scarring of his liver. We always knew we’d need to monitor Fontan Associated Liver Disease (FALD) as he grew, but the results came back indicating more damage than we anticipated for an 8-year-old only 4.5 years out from his Fontan. We started on a medicine we hope will take some strain off his liver, but we have carried extra anxiety this year, as we need to wait at until 2027 to see if the damage is slowing.

Striver had to undergo a heart catheterization to check all the pressures of his Fontan after getting the elastography results. We got the good news that his circuit looked good, and for that we are beyond grateful that he needed no interventions.

During the liver discussions, conversations with cardiology included phrases like “you have entered a no-data zone” and “we will throw everything but the kitchen sink at this.” While there is tremendous investment in heart disease, much of it naturally focuses on conditions affecting millions of adults. Single-ventricle defects affect a much smaller population, meaning there are fewer market forces driving the development of new drugs, devices, or treatments for Fontan patients.

We are walking for the Children’s Heart Foundation (CHF), a broad CHD research funder, which has meaningful Fontan and single ventricle projects. CHF has helped fund:

• Dr. Mark Rodefeld’s work on an implantable Fontan blood pump.
• Work exploring a biologically contractile conduit that could potentially help propel blood through the Fontan pathway.
• Partnerships to create dedicated Fontan/single-ventricle research awards, including those that seek to improve longevity and quality of life after the Fontan.
• Another funding program focuses on lymphatic disease/PLE, regenerative stem-cell therapies and other research capable of benefiting Fontan patients.

Medical research is our greatest hope for our boy, and breakthroughs happen because of fundraising and people like you. Asking for money every year is incredibly uncomfortable for us, but this is why we keep doing it. Whatever you’re able to give, no matter the amount, means more to us than you know. Thank you, always, for loving our boy and supporting our family.

Love,

John, Meg, Striver & Bridge