Help!!!!!!!!

[mlkyle]

This is Kyles mom...my two year old has BAV w/ mild dilation at his aortic root.

My four year old has been checked by a cardiologist with an echo and told everything was fine.

He has had a cough for three weeks now. We got a chest xray yesterday. It revealed an "opacity at his aortic arch". The doctor said we must follow up due to the history w/ my two year old. We were told to follow up with a lung doctor.

The pediatrician actually called the doctor who did the echo and the cardiologist said he felt comfortable that his echo was normal. I even called the cardiologist this week just to confirm his echo was normal just from all I read about how genetic this BAV is and he affirmed to me again on the phone his echo was good.

Should I get prepared to find out that this finding is related to his aortic valve as well?

Please help...

 

[Andrew'sMom]

When in doubt, get a second opinion! I had never heard the term "opacity at the aortic arch" so I googled it .... the things that came up seem like they would have been seen during his echo.... however, always remember that the doctors and techs are human, which means that they can make mistakes sometimes. I'm sorry that you are having this extra stress! I still haven't dug into Andrew's medical record file to get info to pass along to you. We made it thru his birthday, but then had a little stumbling block with his brother who had surgery last week and went for a follow-up today only to find out he has to have a re-do (not heart related!) ... so I am still running at full speed & trying to catch up to myself. Try to take some deep breaths & relax, maybe on Monday you can start arranging a second opinion consult, which may include another echo to help clarify the situation. I'd definitely follow up with the pulmonologist as well. Take good care of your little one, I hope he is feeling better soon!

 

[Andrew'sMom]

We had a similar thing happen to another of our sons several years ago. My son Daniel was born with a Ventricular Septal Defect and had to have surgery as an infant un-related to his heart. While he was recovering in the PICU he had chest x-rays daily because he was on a vent and we were shocked when they told us one day with great concern that his heart was enlarged. We had to do some follow-ups with cardiology there before we were discharged and able to follow up with his regular cardiologist -- who did a repeat echo and said his heart was not enlarged! It's really stressful to have one doctor tell you one thing and another tell you something else! Another thing we went through with Daniel was that when his VSD was diagnosed they looked specifically at his aortic valve (due to Andrew's defect) and said it had no structural defects. A year later we moved and his new cardiologist did an echo and told us he CLEARLY had a BAV. I got him to yet another cardiologist for another opinion, which turned out to be a mix of the first 2 -- a valve that technically had 3 leaflets, but 2 were partially fused, he called it a tri-leaflet BAV. Go figure. A year later at his annual follow-up we saw a new doctor as his old one had left the hospital, and the new doctor also called his valve a BAV with partial fusion. Keep seeking opinions until you feel comfortable that you have the right answer. A mom's gut feeling can be very telling sometimes!

 

[Arlyss]

Even though there is more recognition of the complexities of BAV families today, there is still much for physicians to learn from us. Yes, there are different ways in which the leaflets are fused or partially fused, all included under the term BAV.

Two years ago, a paper was published that mentioned that when a BAV is found, all family members should have their aortas monitored going forward, even when the aortic valve is trileaflet.

Here is a link to that paper

http://www3.interscience.wiley.com/journal/114300691/abstract?CRETRY=1&SRETRY=0

This year, we found that certainly is true in our family. We had another family member have surgery this year, and the aortic valve had three distinct leaflets with no visible fusion whatsoever. However, there was an ascending aortic aneurysm! Those in a BAV family who have normal-appearing aortic leaflets may still have a variation of this condition and be at risk of aneurysm or dissection of the aorta.

Here is a video of one family who knew that their son had a BAV from birth and were told he might need surgery as a baby. His BAV and ascending aneurysm were both replaced in 2007.

http://www.youtube.com/watch?v=hDycw6J-kQU&feature=channel

Best wishes,
Arlyss

 

[Eva]

Sorry that I have no advice to share with you, but will keep you, keep Kyle and your other son, all in my prayers, including Andrew too and Andrew's Mom.

 

[Andrew'sMom]

I can't seem to get to that paper thru the link posted above. If anyone else has been successful, can you paste in on here? Thanks!

 

[Arlyss]

There is a link to the paper on this page that should work.

http://bicuspidfoundation.com/BAV_Families_Awareness_Alert.html

Best wishes,
Arlyss

 

[Lynlw]

There is a link to the paper on this page that should work.

http://bicuspidfoundation.com/BAV_Families_Awareness_Alert.html

Best wishes,
Arlyss

Thanks and it is really good to see you around, I refer people to your site all the time. thanks for all you do

 

[delvalle6]

I couldn't get that link either- but I did find another interesting youtube video presented at the Cedar-Sinai medical center by Dr Rola Saouaf at the Bicuspid Aortid Foundation Third Annual Conference 2008. It is regarding MRI testing of the BAV- I thought it was pretty interesting.

[ link ]

 

[delvalle6]

I found this page http://www.bicuspidfoundation.com/BAV_Families_Awareness_Alert.html
It seems to reference a similar article if not the same article that was posted before. It talks about monitoring family members of patients with BAVD.

One child with a heart defect is difficult enough. After reading these posts, I hope your other child does not have any issues. I'll be checking my other three now.... sharing information helps.

 

[briansmom]

My thoughts are with you. Echos are not always perfect so if I were you I would continue to follow up. I also think that it is very hard to get a clear picture of the arch on an echo. I know your mind goes to the worst case scenario so you can be prepared, and I think you should do your research on that basis. On the other hand, the worst case scenario rarely happens so try to take a deep breath and remember that both your children are safe and can even in the worst case can be well taken care of medically. This is probably a lot harder on you than it ever will be on them - be prepared for the gray hair to start

As others have said and as you can see from my experience, you have to work hard to get doctors to listen to you and take your fears seriously. But you are a Mom and that's what we get the big bucks for

 

[tobagotwo]

Different doctors see different things. Some doctors miss things that are there, some see things that aren't.

Don't get overly upset by the reading of the latest results. Get a copy of that test to the cardiologist, so he can take a good look-see. Let the lung doctor do his thing, and take care of the cough.

My wife was put on a monitor and they called in an emergency consult for a very short, minor arryhthmia. However the staff was all wrought up about it (nor did they understand why Intensely Concerned Hubby showed no interest). The cardiologist just shook his head and rolled his eyes. You'd think they'd know by now. So don't take it too seriously at this point.

Best wishes,

 

[aussigal]

I haven't been on for ages but one thing I do in this crazy BAV rollercoatster ride is to make it easier by havingscans performed by the same technician and read/interpreted by the same person as well...just seems to lead to less individual reading differences and less stress and uncertainty for family etc.

Try not to get over anxious...