Where can I find the best physicians, the best surgeon, the best hospital?
These questions confront us all,
who have BAV and TAD in our families.
It is a question we must deal with
from the first day it is found,
for as long as we live.
It is extremely important to be cautious about where our trust is placed.
We ache for these families and the injury and loss they have suffered.
Coarctation of the Aorta
Little Layla McCarthy, who lives today with paralysis, had surgery to "widen her aorta". Strictly speaking, this is not heart surgery - it is surgery on the aorta, just past the arch. Those with coarctation often also have a bicuspid aortic valve (BAV). Repairs to this section of narrowed aorta may cause paralysis, if blood flow to the spinal cord is impaired. Parents should be told about this risk.
Here is the link to a full paper that discusses informed consent for heart surgery in children: Procedure-Based Complications to Guide Informed Consent: Analysis of Society of Thoracic Surgeons-Congenital Heart Surgery Database Notice this sentence about coarctation: "While complication rate thresholds may guide the clinician, rare but important debilitating complications, such as paraplegia after coarctation repair, should also be discussed irrespective of frequency." Yes, it is important to know everything.
Searching for Answers
This is why the Bicuspid Aortic Foundation puts great emphasis on researching physicians and their associated hospitals. When individuals and families meet with physicians, we need to press them for answers to the hard questions, do our best to find out what could possibly go wrong. In addition, we should do everything possible to independently confirm the answers we are given,
It is not easy to discuss these things, but how much worse to have a false sense of security and complacency. It is not helpful to hear phrases like "it's a walk in the park". We need solid information about numbers of the exact surgery performed by the surgeon we are considering, and the complication and death rates involved. We also need to know about infection rates for the hospital.
No matter what our age, from infancy to later in life, we must seek the very best to care for us. Some day, perhaps there will be more openness, more transparency. Until then, may we all do what we can, and make every effort to ask probing questions and seek answers until we are satisfied we have done what we could.
Walking this BAV/TAD road together,
sharing with one another,
we create a climate of hope.
Best wishes,
Arlys Velebir
Bicuspid Aortic Founation
