My questions are: 1) where can I get information on the short and long
term prognosis on having only two cusps; 2) any information/ statistics on
the cause of this defect; 3) was the breathing problem directly connected
to the aortic valve defect; 4) should infants with these type of
conditions have a monitor while sleeping; 5) is he at risk of SIDS or SADS
or Congestive Heart Failure; 6) what are the stats for cardiac problems
when he becomes an adult?
Although I know I need to find out most of this information from his
doctors, any information from those of you with knowledge of this
condition would be appreciated. My daughter and her husband are young and
I do not believe fully understood the cardiologist's explanations, and I
was not present. The doctors released both the mother and baby after
thirty-six hours with an appointment set for the pediatrician at two weeks
and the cardiologist at two months.
Please respond to Brenda in care of email: mon...@inetp.com
Aside from your grandson's physicians,
from Hurst's textbook titled The Heart (8th Edition) pages 1795-96:
"The majority of congenitally bicuspid aortic valves are nonobstructive
at birth, but with the passage of time a few of these will become
fibrotic, stiffer, and more obstructive and will eventually be the site
of calcium deposition primarily among individuals between the ages of
15 and 65. Important calcium deposition is unusual before the age of
30, whereas grossly visible deposits of calcium are present in the
valves of virtually all patients with severe stenosis beyond that age."
This textbook should be available at most medical school libraries and
some of the larger public municipal libraries. Actually Willis Hurst,
MD is one of my mentors in Cardiology here at Emory so I don't mind
recommending his book.
2) any information/ statistics on the cause of this defect?
2% of the general population has the congenitally required problem. It
is 2.5 times more common in males than females.
3) was the breathing problem directly connected to the aortic valve
defect?
No. IMHO, sounds like aspirated meconium.
4) should infants with these type of conditions have a monitor while
sleeping?
For just the bicuspid aortic valve problem, no. For the respiratory
problems, I would leave for your grandson's primary physicians as they
know the case better.
5) is he at risk of SIDS or SADS or Congestive Heart Failure?
No for SIDS. Yes for CHF if he has significant aortic valve stenosis
or regurgitation. He will need antibiotics to prevent infection of his
aortic valve with any dental work or GI surgery.
6) what are the stats for cardiac problems when he becomes an adult?
Long-term prognosis into adult-hood is extremely variable. Most would
say 2-4 times more likely to have heart failure over their lifetime
than people with normal aortic valves.
Hope this is helpful. Feel free to email me if you have further
questions.
--
Andrew B. Chung
http://userwww.service.emory.edu/~achung
Hi Brenda,
My daughter, who celebrated her 20th birthday in April, also has this
condition. We weren't aware of it until she was 2. On her routine 2 year
exam the murmur was heard for the first time. She had a heart cath at age 5
1/2 and was found also to have stenosis of the aorta. That was repaired at
UCLA at age 6. Since that time, she has remained well. She has no
restrictions or medications other than antibiotic for dental etc. I was told
that she may go all her life without any problems or she may need a valve
replacement in the distant future.
Needless to say, we were crushed when she was diagnosed with this condition
but so far, so good. Try not to worry, it could be alot worse. Sara