I recently began work on a model of sorts, a design if you will to better serve the local Phoenix community and to help ensure better outcomes to these most complex patients with Heterotaxy. I think it has really come together nicely, and I am so glad this is taking off.
We have had some tragedy here locally over the past year, And I for one, cannot ignore tragedy. We all know some patients just aren't going to make it. But these issues, these issues resulting in loss were not warranted. They could have been better managed patients that would have resulted in a better outcome. So how can we better manage patients with these complex conditions? Its really simple, a multi disciplinary approach. Ensuring that these patients are seen by a myriad of specialties is the only way to get better outcomes. Proactive care is what is needed instead of reactive care.
These children need to be cleared by all indicated specialties. Not just cardiology. Hepatology, Nephrology, Immunology, Neuro, Endo, GI, and so many others.
Patient presents, patient is seen by cardiology, and surgery is done if needed. Then the patient goes through the "roadmap" of sorts, they see general surgery to discuss malrotation, GI, Hepatology to look at any liver issues as well as liver vasculature issues, Immunology to discuss vaccinations, and to discuss immune issues.
No patient should be 3 or 4 years old and not been seen by general surgery to rule out malrotation. No child who is a single ventricle Heterotaxy patient should undergo a Kawashima or Fontan without proper mapping of the liver vasculature.
Fact is this ~ we MUST know the child's anatomy, in its entirety. The only way we can properly manage and care for these patients, is to proactively image and monitor these children.
I dont want another parent to have to bury their child. I dont want another parent to have to hear the 3 no's for a transplant, and theres nothing else they can do for your kid like I have. We can make it better. We can advance the practice of medicine. With parents as partners in the world of complex pediatric medicine, we can improve outcomes.
I'm ready, are you?