Thursday, December 20, 2007

Bicuspid Aortic Disease


The day of Brevin's birth, we were told he had a heart murmur. "Most of the time it goes away as the heart develops" said our pediatrician to reassure us. Sure enough, at one of the following appointments, there was no trace of a heart murmur. But when Brevin's 3 month checkup came around, the murmur was back.

Twice a month a heart specialist visits our clinic so Erin set up an appoint for this past Monday. Upon further review and a few hours in the hospital, Brevin was diagnosed with Bicuspid Aortic Disease (BAD).

So what does that mean?

Anytime you hear "heart" and "disease" in the same sentence, you immediately put the two words "death" and "sentence" together. But hold your horses! For a quick answer to contain any panic, "two-thirds of people that have a bicuspid valve, it functions well for life."

What is a Bicuspid Aortic Valve?

According the American Heart Association:

The term bicuspid aortic valve refers to the leaflets of the aortic valve. This is the valve that leads out of the heart to the aorta, the big blood vessel that delivers oxygen-rich blood to the body. Normally, the aortic valve has three leaflets. A bicuspid valve has only two leaflets.

Because of this, patients with a bicuspid valve may develop a narrowing or leakage of the aortic valve. Narrowing or leakage of aortic valves do not necessarily develop in childhood, but may occur in adulthood. On rare occasions these problems require repair, either with a balloon (cardiac catheterization) or surgery. To determine whether narrowing or leakage is present and related to the bicuspid aortic valve, the cardiologist follows the patient with non-invasive tests that may include: electrocardiograms, echocardiograms and stress tests. If narrowing or leakage of the valve becomes severe enough to require intervention, your doctor will explain this to you in more detail. In many cases, bicuspid aortic valves do not require any intervention in childhood and children with them may not need activity restriction. A pediatric cardiologist will make specific recommendations for activity restrictions for each patient based on the severity of the valve narrowing or leakage. Restrictions may be put in place to assure that a normal amount of oxygen gets to the patient's heart muscle at all times.


So what does this mean for Brevin?


Brevin's next "heart" appointment is when he turns one. I'm assuming they will do the same thing to him they did Monday which is put those stickers on him with cords attached to monitors and then look at his heart via an ultrasound. We will have to monitor his heart, at least for now, on an annual basis.

Initially the heart specialist said we would have to monitor his "strenuous activities". ie. football, weight lifting, hockey. But that's only if his valve starts to become "insufficient". So for those of you who thought Brevin couldn't try out to be a Packer, fear not. As long as his valve is handling the blood flow normally, he could be the next Brett Favre. (Ok, so he won't achieve that status with my genes, but you get the picture.)

Other than that, Brevin should have a normal life with no restrictions.

If you'd like more info, eMedicine.com is a great website that has helped me and where I got the majority of my stats.

Bottom line is anytime you hear your child has a heart disorder, you are obviously concerned. And being that out of Erin and I, I'm the more relaxed one, Erin took the news extremely well. I was so proud of her! She didn't get worked up but just wanted all the information she could.

After we found out, Erin called both sets of parents and explained the situation to them. I'm not sure how they took it but let me just reassure them that Brevin is loved by God and when Brevin is old enough to understand, I know he will love God as well. The big picture is easy to forget, but ultimately, that's our only hope in this life.

If you think about it, would you lift up Brevin in prayer every now and then? Pray that we would keep this disease in the back of our heads and not dwell on it. Pray for healing concerning his valves and that God would open the third up. Pray that Erin and I would be wise in how we monitor this lifelong condition (that is unless God intervenes).

Thanks again everyone and Merry Christmas!

—b

3 comments:

Anonymous said...

It's good to read your blog again - great pictures! I'd love copies. Have a safe trip to Peshtigo and greet the Johnsons for us. Merry Christmas!
love, mom

Anonymous said...

Hi,

My name is Wendy and I also have bicuspid aortic disease. I wasn't diagnosed until I was pregnant with my last child. I am now 46. I can remember times when I was a child in elementary school when I had shortness of breath and chest pains whenever I had too much physical activity. But, I never knew what it was. I haven't been treated by a cardiologist for this condition and I am just trusting God. I know that as a parent with a child with this condition it must be a concern. My parents did not know that I had this condition, so they didn't have that concern. Well, I just wanted you to know that there are survivors with this condition that have not been treated. Blessings to you.

Unknown said...

I don't know if you'll check this again but thank you Wendy for your words of encouragement. It's great hearing from someone who's living with the condition. It's also very encouraging knowing you haven't had any surgery and are mom (which means your always active). Anyway, thanks again Wendy and may God continue to bless you!

—b