My youngest child was born 28 days ago with multiple congenital issues, including from a cardiac standpoint: CAVC, D-TGA, RAA, bilateral SVCs, Interrupted IVC, and mild pulmonary stenosis. Currently right now she is having issues with mild pulmonary overcirculation (O2 saturations running from 95%-100%, fluid seen on x-ray, and tachypnea).
Adding a complicating wrench into everything is the fact that she was diagnosed earlier this week with Diabetes Insipidus, and has numerous issues with keeping her sodium levels under adequate control (they have been persistently in 171-176) and maintaining an appropriate fluid balance and replacing her excessively high urine output. Because she also has cleft lip and palate, a head MRI was done that showed an absent septum pellucidium but a normal pituitary gland and otherwise normal MRI (there were concerns about optic nerve hypoplasia, which was ruled out). She also has right sided hemi-facial microsomia with a missing right ear and post-op for a Ladd's procedure for malrotation.
Currently, her cardiology team is concerned that part of the reason her pulmonary overcirculation has been mild up until this point is because her untreated DI has meant she has been voiding such a large fluid volume, and that in getting her DI appropriately managed and her urine volume to decrease, it will make her pulmonary edema significantly worse. Adding diuretics becomes complicated because of the need to manage her endocrine needs. She is currently in the CICU.
My question to you is: how often is a combination of heterotaxy and diabetes insipidus seen? Is this combination of issues something cardiologists are in general familiar with? How closely to do I need to manage the communication between endocrinology and cardiology? Who will fundamentally be the ones responsible for managing her fluid balance--- cardiology or endocrinology? She has also not gained any weight since birth--- is that a cardiac or endocrine issue, or both?