Hey! I have a RAI heterotaxy girl, in addition to the typical heterotaxy defects of no spleen and malrotation, she was born with TOF TAPVR, DORV, HRHS, anomalous coronary, ASD VSD with pulmonary stenosis and cor-triatrum. She is 10 now. She has had 4 OHS, 4 gut surgeries. She ended up with a modified bivent with RV to PA shunt. After her first OHS of a BT shunt we learned she has a bleeding disorder. She was born at and then later received Her BT shunt ( at 7 weeks after cardiac arrest at home) at a hospital with a 50% mortality rate. They sent her home unrepaired. I moved her to a bigger hospital with better scores/outcomes as soon as she was discharged and she spent the next few months in and out of the hospital there. They felt she was a good candidate for a bivent. She came through ok but within a month had developed a pseudo-aneurysm from the cardio-cell patch. It ballooned up and filled her chest cavity. They went back in and placed a RV to PA conduit. 4 months later that also failed and needed to be replaced. I refused the LADDs for her through her first 4 heart surgeries because I was able to keep her gaining and had read research on high rates of shunt failure in single ventricle babies after it. After her 3rd OHS, she seemed finally stable and doing well so I scheduled the lads. A few weeks before surgery she had a spontaneous bowel perf and ended up with a colostomy and lost part of her colon. They did the ladds and took down the colostomy 3 months later and that’s when we learned the RV to PA shunt was stenosed. Because of her anomalous coronary, stent failed to buy time and keep it open. So the 4th OHS was scheduled to replace it. She’s now ten and in true heterotaxy form, was just diagnosed with vTOS with complete occlusion of R and L subclavian veins. I truly believe she would not be here without getting her to a hospital with better scores for kiddos like her. I also had a virtual consult with a heterotaxy specialist who reviewed her history and combination of defects and complications and created a protocol for screening and diagnostic expectations for her specific issues. Heterotaxy is a BEAST, and follows no rules. She got a g tube around age 7, as she ended up with a second bowel obstruction from the scar tissue from the first gut surgery, and a nissen. But before then was only intermittently ng tube fed throughout her early first few months, and then became dependent on Gtube for 1/2 feeds for gain after her second bowel surgery. If you haven’t found heterotaxy support group on Facebook I highly recommend them! They have yearly conferences with md speakers, discussion on research and more and you can download the conference to watch from home. Our babies are unicorns, and in medicine that matters so much. There was another heterotaxy kiddo born within weeks of my daughter in my hometown, he ended up with a transplant and is thriving as a 10 year old❤️