Baby with heart murmur, I am so scared all the time, anyone have knowledge on this?

Question

My son is 15 months old and he has BAV (bicuspid atrial valve) & aortic insuffieciency. From what I know so far from DR visits is that he has a leaky aortic valve which can cause narrowing, at this point he is in the trivial to mild numbers of leak. However when someone tells you that your son has a heart condition its not trivial to you. He sees a cardiologist every 6 months for an echo and ekg and I have been told that he will prob. have valve replacement in a few years, but I dont understand when I read on here people who have grown out of this? Is that possible that a valve can repair itself? And why would a dr only want to see him 2 times a year? Its like they tell you its serious, but we'll see him in 6 months, it cant be that serious right? Wouldnt they want to see him every month or something. He has no blueing around lips, great pulses, great oxygen, Am I just overreacting by panicking all the time, I guess I am just a paranoid parent, but this over whelmes me every day.

To look at him you would never think that he had anything wrong, he is 25 lbs, higher end of growth chart, no blueing, no failure to eat or drink, no fatigue, nothing that you hear of other heart complications

Answer 1

I whole heartedly agree with you. When you are told that a loved one has a heart condition of any sort, trivial is certainly not an accurate way to describe the condition as it is an issue of great importance to you. However, I believe you should find some comfort with the doctor describing the condition as such. While it is rightfully so that this is not a trivial to you or your child by any means, in the doctors eyes he or she apparently does not see it as life threatening or effecting the quality of your childs life at this time. I think the doctor could find a better word to describe the condition, but I to have come across doctors that have used this word in describing a patients condition. The condition certainly is not trivial to the patient, but with doctors seeming to be lacking emathy as they do, the word trivial seems approprate to them. So take solace in the fact that your doctor finds the condition to be trivial is a good thing.

The echo and ekg are great noninvasive tests. The ekg will till the doctors if the heart is getting sufficient blood flow, and the echo will give the doctor valuable diagnostic data regarding your sons heart valves. Good diagnostic results from these tests are an indication that your son is doing fine. And the fact that the doctor is doing them only semi-anually should give you reason for encouragement, as he would probably do them more frequently if he saw the matter as life threatening.

As you are probably aware, a heart murmur is a small hole in the heart. In most cases, this does correct itself in many patients. It is not at all uncommon, and statistally speaking, your son will probably outgrow this and not require and invasive procedure to correct it. Heart valve abnormalities are also not uncommon. Mitral valve prolapse (an abnormality in the heart valves which can cause problems such as what you have described) is diagnosed in many individuals. Most individuals do not require corrective surgery for this. Most people that are diagnosed with this go on to live healthy productive lives and are not effected by this diagnosis. However, whenever having dental work done or an invasive procedure of any sort, it is necessary to take antibiotics prior to, because if there is an infection as a result of the procedure it can adversely effect the heart. But simply taking the antibiotics prior to will address this problem. And in the event you son does ever require and invasive procedure to correct these issues, it is not considered "high risk", but a very low risk procedure as far as adverse complications. Of course you will find any procedure to your dear son's heart as a matter of grave concern. But take heart, (pun intended) your son may or not need surgery to correct this, but if he does, statistically speaking, it is extremely probable that he will come through with flying colors and continue to grow up being the apple of your eye. Love your son, appreciate life and all of God's blessings for all of the wonderful things each day has to offer, keep God at the center of your life and put it in His hands. We cannot dwell on the potential obstacles that we may face tomorrow, we have to live in and enjoy the moment or it will pass us by without having been appreciated as God intended. Put it in His hands. My prayers are with you and your son. May God bless you both.

Answer 2

Not to freak you out or make you worry more but I too was born with a heart murmur and the doctors originally told my mom I would have to have corrective surgery. They told her I would not live past the age of five. I was like your son, I looked very healthy and no one could tell anything was wrong, As I got older they pushed the surgery back because I "looked" good. Most of the children with the condition I had died between the ages of 11 and 14 without any intervention. I continued to thrive and my regular check ups became fewer and farther between and less invasive. When I was 27 I went for my annual visit and within 5 months I was given 2-5 years to love and placed on a transplant list. Within 10 months I had my heart transplant and I am doing well. I am not trying to startle you I just think you should get a second opinion, I know my mom wished that she would have.

Answer 3

First of all, let me assure you that you are NOT being paranoid. A structural murmur (one borne of a structural cardiac defect) is definitely not benign and thus requires serious medical attention. Hoever, judging from what you have written, it is possible that the the cardiac defects are not so severe as to cause cardiac dedcompensation (as shown by poor growth, poor feeding, inappropriate sweating, tachycardia, tachypnoea, bluish tinge on skin and lips) at present; this may be why your doctors schedule your baby's clinical visits at 6 monthly intervals. Cardiac decompensation may occur at a later age, when your baby's cardiovascular requirements increase with body size. It sounds likely that your baby will require valve replacement surgery in the years to come; however, it is also important to decide upon the best time to perform such surgery. This is because if done too late, irreversible deterioration of cardiac function may have occurred; on the other hand, if done too early, the valve may need to be replaced as your baby grows, necessitating repeat surgery.

Answer 4

Hey there, I don't have an answer for you but I wanted to let you know that it sounds like you are a good mother and your son is very lucky to have you as his mom.
It must be very frustrating for you not knowing exactly what is wrong with your little one. My heart goes out to you.
One thing you must remember is that every medical condition for each individual person is different. No two are exactly the same in every way.
My advise is to speak to your cardiologist more and to read up on information from very reliable resources such as books written by cardiologists on this type of insuffieciency. Don't only take what you learn from here and believe it as truth, you must use good resources, educated resources.
Best of lucky to you and yours.

Answer 5

I was born with a functional heart murmum that the doctor said was the loudest he had ever heard.

I never had any issues, I have lived a perfectly normal life and at 21 the doctor told me that he could hear no murmur at all.

So, yes, the body can fix itself. But it is always a concern and you are right to be concerned. I would just not fret until the doctors actually tell you things are getting worse.

Answer 6

i had a heart murmur caused by a hole in my heart (atrial sinthracal defect) as a child, i was operated on when i was 10 and i'm now 45 and have no ill effects... the doctors will know how often to check on him, but if it would make you feel better, you can always get a second dr to look.... good luck and try not to worry

Answer 7

I dont think any of us can answer this because we dont know how bad the murmur is
My son was born with a heart murmur and now he is fine, he is 19 years old now
It depends on if your son will grow out of it
just take him to the doctor and regurlarly and read up on heart murmurs to get more info...

Answer 8

Lots of people are walking around with a heart murmur and live completely normal lives.. I know it is scary, because he is your son.. they are prolly monitoring him to see if it does close up on it's own.. Try not to worry...

Answer 9

get a book from your local library. they generally have alot of information in them, and more accurate than yahoo ask.

its okay to be paranoid