One year old daughter passed away. Found out she had BAV.

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Chaconne I was able to read the article, thank you for that. They didn't go into great detail about her bicuspid valve like they did in that article there though. This is exactly what her autopsy says about her heart. I am thinking she had more than just bicuspid valve. I made an appointment to go talk to our family physician on Friday to understand all of this better.

It says her heart weighed 37gm (normal weight for age would be 44gm) The right coronary artery, left anterior descending coronary artery, and circumflex coronary artery each arise separately from the aorta and are all widely patent. Two aortic valve cusps are fused to create a bicuspid aortic valve. In addition to the previously described separate three ostia, a dimple is identified within one aortic sinus. Myocardium dark red-brown and firm with right and left wall thicknesses of .4cm and .9cm. Atrial and ventricular septa intact and foramen ovale is closed. Intima unremarkable and suctus arteriosus is closed. Only two brachiocephalic trunks arise from the arch in the aorta.
Congested intramyocardial vessels. Heart blood cultures positive for entercococcus species.

Prognosis:
1.Congenital Anomalies
a. Bicuspid Aortic Valve
b. Origins of Coronary Arteries
c. Origins of left Subclavian and left Carotid Arteries

2. Asphyxia

3. Chronic Tracheitis

(For some reason the infection entercococcus faecalis was not put under the prognosis.)
 
Just wanted to update on this. I talked to our family doctor and also the coroner extensively. Seems she did not have an infection at all so that is a relief. Really the only thing they could find wrong with her was the heart defects. BAV and "misplaced coronary arteries". My family doctor doesn't believe the heart defects were severe enough to cause death. (He used to be a coroner also) He said he would have ruled it SUDC. (Sudden unexplained death of a child, similar to SIDS but for children over a year old). However when I talked to the coroner he says he truly believes those heart defects were severe enough to cause her to pass away. He said they could cause an abnormal heart rhythm which would result in sudden death. He said she probably got face down (the way I found her) and her oxygen got low, which would usually prompt a child to move, and then because of her defects it triggered an abnormal rhythm and she died. He said he has seen this exact situation many times with people who have the same heart problems as Lucy.

So I guess next step is talk with the cardiologist and see what he thinks.
 
Thank you so much. Received the death certificate today. It says she had the bicuspid aortic valve and that the actual name for her misplaced coronary arteries is "Anomalous Coronary Arteries" or ACA for short. And after doing some research it seems this is a very serious problem. I am praying so so SO hard that my other children did not inherit this also! I am so worried. Thank you everyone for the continued prayers.

Why are Anomalous Coronary Arteries a concern?

ACA is of concern because there may be no indication that the condition is present until a severe event, such as chest pain, heart attack, or even sudden death occurs. A child may have remained asymptomatic (free from symptoms) throughout childhood, and be completely unaware that he or she had a problem.

Individuals with ACA involved in strenuous activity or athletics may be at risk for sudden death and may need to modify their exercise routines. Between 4 and 15 percent of young people who experience sudden cardiac death are found to have a coronary artery anomaly. ACA is the second most common cause of sudden death in young athletes.
 
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