5 Holes in Heart with Abnormal Heart Wall

[twalkgirl2]

My daughter has had 3 echocardiograms done and we were told she had an aneurysminal wall with a flap at the top where there was a hole that hadn't closed. She continued to have breathing problems and a racing heart. Last Thursday the heart Dr did a scope and a heart catherization on her. The findings were that she has an abnormal heart wall shaped like a horseshoe which has 5 holes on it. 2 of them are on the top and very close together
3-4 mm and the next 2 are lower down and are 1 mm each and the one on the bottom is 2 mm. They measured the shunting of the blood and said it was minimal at best (about 1 point lower than what they would have done surgery). They could not repair the 2 top holes because they are too close to the top of her heart and a device could rub a hole in her heart. Open heart surgery would be a greater risk than living with the holes. The wall is very thin and she is too avoid stress. Her cortisol level is high and they have ruled out all other reasons except stress. They said go on and live your life and you will be fine. People live like this all the time but in the same breath said they had never seen a heart wall like hers. I would like another Dr to tell me this is normal. Is it ok to walk around with 5 holes in your heart ? She still has a hard time breathing and it scares her. She is a cheerleader and at this time she doesn't know if she should go ahead and be active or what. Her reasoning along with mine is that we were told for the last 5 months that she had 1 hole just to find out she actually has 5, so could they be wrong about this also? They said she has normal rt heart pressures. I am scared and I would just love to have your input in this so that I can help my daughter put closure on it or should we seek out another Dr. PLEASE tell me what you think ...

[twalkgirl2]

Thank you so much for your response. I am sorry that I didn't give you all the details but you knew them anyway. That's great to me. My daughter's final diagnosis was
: Fenestrated Patent Foramen Ovale. She also has had 2 halter monitors that showed her heart rate to be over 200 and at that time they put her on beta blockers that dropped it so low she passed out so they took her off of them. It still goes up high at times but usually it stays around 100 bpm. The Dr. said her heart was not enlarged. He said he didn't know why she was having a hard time breathing and he thought her heart rate was high due to stress. This is why I wanted to get another opinion and I thank you so much for your's. I didn't even know there were other devices to use to close the holes. He led us to believe the only other option was open heart surgery. Thank you again.......You are such a godsend to so many parents.

[Jeffrey R Boris, M.D.]

Dear Twalkgirl,

Without seeing the actual information, it is difficult for me to tell exactly what is going on here.  By your description, my best guess is that your daughter has a patent foramen ovale, which is a normal finding in all fetuses and newborn babies.  The foramen ovale is a flap valve in the atrial septum ( the wall) between the atria (the upper two chambers of the heart).  It typically closes within the first year of life, although 25-30% of all adults have it remain open.  It sounds like there may also be several other tiny holes in the septum, as well.  These are called atrial septal defects, and she was born with them.  We sometimes refer to this as a multiperforate atrial septum.

In your daughter’s case, although the individual defects are relatively small, it sounds as if, when taken together, the amount of blood going through all of the holes together may be enough to cause the right side of the heart to be dilated and to possibly cause her symptoms.  Over the long term, this may end up giving her complications such as abnormal heart rhythms as well as pulmonary hypertension, high blood pressure across the lungs.  Although the cardiac catheterization showed that the shunting was “1 point lower than what they send to surgery,” it may be that these defects, or at least some of them, should be closed.  One of the options mentioned to you was placement of an atrial septal defect occluder device by catheter.  However, there was concern that the proximity of the edge of the device to the edge of the heart may cause it to erode through the heart.  That would be true for the most commonly used device, the Amplatzer.  There are other devices or potential options, though, which may be viable.  I would recommend that you consider a second opinion at a center that is performs a large volume of catheter-based atrial septal defect occlusion to see if even some of the shunting could be occluded.  Based on the size of the defects, it sounds like all that has to be done is to get rid of most, not all, of the defects to improve your daughter’s condition.  Obviously, if all of the defects could be occluded easily, that would be nice.  The lining of the heart would then grow over the device.