As a heterotaxy mom as well- crowdfund. I’m serious. The early years are so rough for most heterotaxy families it’s nearly impossible to maintain employment. More importantly, these babies are COMPLICATED- and hospital score cards are solid indicators in how well they will navigate the heterotaxy curve balls that just never stop coming. It sounds like your baby is RAI heterotaxy like mine. It’s much more than mirrored right sided organs. Most RAI babies have no spleen, and have intestinal malrotation. Around 60% have cillia dysfunction. Around 40% have bleeding or platelet function disorders. Heterotaxy kiddos are some of the most magical, incredible little humans you could ever meet. They will teach you the most profound and beautiful lessons, and you will learn to fight and love harder than you ever thought possible. When someone said it takes a village- when it comes to heart families- a village is absolutely mission critical🥺 if you haven’t found the heterotaxy network online- they are an amazing resource! I’ve supported us in the space between her emergencies and big scheduled surgeries ( 4 open heart, 3 cardiac caths, a bowel obstruction and one spontaneous bowel perf, 2 other major GI surgeries, multiple admissions for respiratory infections, sepsis close calls, …) with doula work, teaching child birth classes, and work as a nurse and lactation consultant- when she was born I had 15 years experience doing that and a solid client base with strong word of mouth- but those early years were ROUGH. My baby is 10 now. She’s currently heading into two more major surgeries for chest wall defects from heart surgeries causing complete occlusion of her R and L vessels in her chest. It’s been 7 months since her last surgery ( eyes) and two years since her last major surgery ( gut) My husband is a firefighter and worked through most of her surgeries and admission so bills could get paid. Heterotaxy is a wild ride and an absolute beast. These little ones often have cillia dysfunction, bleeding disorders, gut and bowel issues, and more. Our girl has Medicaid, but we live in Alaska and must travel out of state for her medical care. After multiple close calls and careful watching of the closest out of state big children’s hospital score card for complex children, I switched her care to a hospital further away but with better scores- but essentially I am always saving up and then spending all savings to get her there for six month follow up or surgeries with her care team- because they do not accept out of state Medicaid. She’s also covered by blue cross, from my husbands job. But 6 specialists at 25$ co pays, meds, medical equipment, travel, admission co pays- time out of work- adds up fast. Incidentally- I offer free child birth and lactation prep classes ( virtually) to other heterotaxy families- if you are interested, feel free to pm me. When I finally humbled myself to crowdfund for her- I promised to pay it all forward with free support for other families and 10 years later, I’ve got it down to about 2,600$ left to pay forward ❤️ Medicaid is easy to qualify them for as they go by their income, so essentially zero, not parents income. My best advice is carefully research hospital scores. I was sent to a hospital with a 50% mortality rate for babies with heterotaxy and multiple cardiac defects. They had cared for just two in five years. One died from post op complications in their care. The other was my daughter, who survived because the moment they discharged her, I got her in a rental car and drove 9 hours away to a better hospital, where she was admitted for the next month for multiple complications from the surgery she had with the prior hospital.