What does my baby have? [Take One]

The SHORT ANSWER is – your baby likely has combined (complex) malformations that are the result of biological communications between Capillaries, Lymphatic Vessels, and Veins. Some may also have developmental interactions that include the Arteries, and/or the small Arteries.

TOP OF PAGE BUTTONS GO TO SINGULAR & COMBINED MALFORMATION INFO

If you found your way to our Journal, there is a good chance you are a parent of a child born rare. Maybe like my parents the hospital staff didn’t know quite what to say or even said things that came across incomplete to you. This website is an online journal by Dawne and Bill about their journey living with Bill’s congenital vascular anomalies, malformations, symptoms, syndromes. We may have insights into your future questions and needs.

We are not doctors. We are 40 plus year experienced laypersons who have searched, shared and suffered through many a doctor visit where these professionals knew less than we did. In no way are we discrediting the medical profession. Bill’s family is filled with medical professionals who are quick to say its not possible to know everything medical, particularly when it comes to those born rare. We have learned that it is our duty to query, read, question, gather, synthesize, and share information and resources. In doing so the unexplained becomes more understood.

With the above understanding, if your baby’s legs, arms, torso, neck, or face look like Bill’s legs then it’s a fair assumption that he/she has Congenital Vascular Anomalies, more specifically Congenital Vascular Malformations. There is a classification distinction made between the Vascular Anomaly category and Vascular Malformation categories, but for now either term takes you down the pathway to a better understanding.

Right up front we seek to establish a very important foundation – congenital means a developmental condition that happened during gestation, during pregnancy. The overwhelming majority, if not all, were caused by a purely RANDOM mutation in one cell which then replicated itself as we developed our vascular system. Along the way some of us, but not all of us, developed other malformations which include soft tissues, bones, muscles, connective tissues, internal organs and/or our neck & head. Med-science speculation is that the first cell to mutate did so at early stages in the pregnancy. It’s not all that inappropriate to see us as having a life long “developmental” disorder which turns into a degenerative disorder at some point in our life, mostly when we are adults – although sometimes earlier.