JuneBug’s Journey: A Heart Hero’s Journey of Perseverance & Unwavering Faith
Written by Joel and Jordan
Joalie June Sochor (‘JuneBug’) was born on June 6, 2019. She was diagnosed with CHD (Congenital Heart Disease) in utero, with ‘ complete balanced AVSD’ (Atrioventricular Septal Defect). She was hospitalized five times before four months of age due to failure to thrive and received a G (Gastrostomy)-button. At four months old she underwent her first open heart surgery (reconstructive surgery), where it was determined she had ‘complete unbalanced AVSD). Two months later this reconstructive surgery failed, and she was placed on ECMO (Extracorporeal membrane oxygenation) and underwent her second open heart surgery, where she received a biological Melody Valve in the Mitral Valve position. At this time, we were living in Doniphan NE but relocated to Omaha to be closer to Children’s Hospital for her continued care.
At three years of age, the Melody Valve tired/failed causing her Mitral Valve pressures to reach dangerously high levels and Joalie underwent her third open heart surgery, where she received a Mechanical Saint Jude Valve in the Mitral Valve position. At this time, it was required for her to start an anticoagulant (Heparin then Coumadin – both blood thinners), to prevent blood clots from forming on her mechanical valve. The result of blood thinners as well as mistreatment/placement of her G-button caused her to have several stomach ulcers and bleeds which required three Gastrointestinal surgeries to stop the bleeding.
Joalie also came out of her 3rd open heart surgery with complete heart block with no escape rhythm, and after 10 days of an external pacemaker, the decision was made for Joalie to undergo her 4th open heart surgery to place an internal pacemaker (paced at DDD) and connect the necessary leads to her heart. Joalie never recovered any natural escape rhythm and is now completely dependent on the pacemaker.
Further complications took place as her cardiologists noticed she was now suffering from Aortic insufficiencies. Therefore it was decided to go back to the operating room for her 5th open heart surgery to repair or possibly replace her Aortic Valve. During this 5th open heart procedure, the cardiac surgeons determined that they had overstitched when placing her mechanical mitral valve and caught a portion of her Aortic Valve with a suture, thus distorting the shape of the valve and puncturing a hole in her Aortic valve leaflet. They removed the stitching and then had to patch her Aortic valve leaflet, still leaving her with mild Aortic insufficiency.
Throughout all of this a blood clot then formed on the new Mechanical Valve and since she was unable to undergo yet another open-heart surgery in such a short period, the decision was made to conduct a TPA (Tissue Plasminogen Activator) run in an attempt to dissolve the clot. This TPA procedure is only intended for short periods of time but after no results in 24 hours (echocardiogram still showing dangerously high Mitral Valve pressures), TPA was continued to be administered and eventually was successful in dissolving the clot after 36-48 hours, however, it also caused a severe brain bleed (an acute TBI – Traumatic Brain Injury) for Joalie. Joalie then underwent an emergency Craniotomy and brain surgery. After surgery, Joalie had multiple seizures and was diagnosed with Cerebral palsy. She had to undergo daily physical and occupational therapy to relearn to use the whole left side of her body, including her ability to walk and use her left eye and hand. Joalie is still working on her speech and large motor skills.
Due to extensive swelling, it wasn’t until seven months later that Joalie was able to undergo a cranioplasty to replace the portion of her skull, but her skull had grown while the removed/replaced portion of her skull had not, which has left a partial gap in her skull that needs to continue to be monitored for safety and future growth.
Joalie has now had multiple heart surgeries and a Craniotomy that would have otherwise resulted in death. Through follow-up Cardiology visits and multiple echocardiograms it has been determined that Joalie still suffers from elevated/high Mitral Valve pressures/gradients that need to continue to be monitored closely and regularly. She is also dependent upon and will indefinitely remain on a blood thinner throughout her lifetime which requires continuous monitoring to ensure her INR (International Normalized Ratio) stays within safe levels to prevent future clotting as well as the risk of hemorrhaging (additional brain bleeds) and hematomas. Also confirmed at her last GI visit, Joalie still requires more than 80% of her daily caloric intake via the tube feedings. As JuneBug continues to grow she will outgrow her current mechanical valve and will have another valve replacement in the future.
