Daughter has aortic regurgitation

Sylvia - posted on 07/31/2012

Hhi jess my son Alex. Was born with v s d / a s d / PDA / fixed at 9 months very I'll. But. Did good for a few years. Then 2 years ago started having I'll spells again. Found out 3 valves. Are leaking ... Triceps. Mitral and pulmonary The mitral is deformed and not growing as it should do He will need a replacement in time but fingers x. He can stay out as long as possible. ... We do find he gets stitch a lot now and dose not walk as far as he use to ... His 8 and has ds ...

Sylvia - posted on 07/31/2012

Hhi jess my son Alex. Was born with v s d / a s d / PDA / fixed at 9 months very I'll. But. Did good for a few years. Then 2 years ago started having I'll spells again. Found out 3 valves. Are leaking ... Triceps. Mitral and pulmonary The mitral is deformed and not growing as it should do He will need a replacement in time but fingers x. He can stay out as long as possible. ... We do find he gets stitch a lot now and dose not walk as far as he use to ... His 8 and has ds ...

Krista - posted on 06/22/2012

Hi, I know you posted a while back, but wanted to comment... our son was born with AVS (Aortic valve stenosis,) and underwent a balloon vavoplasty at 3 weeks old. We were terrified, but all went well. It was crazy... they sent him home the same day as the valvoplasty with just a pressure band-aid on his leg!! The docs said that it would hold him over for a few years, but he would need his aortic valve replaced within a few years. Now he has Aortic Valve Regurgitation and was checked every 6 months. It has also been classified as severe, even though he is asymptomatic. We have lived with it for years like this, but it has gotten progressively worse, even though he had NO symptoms. He was even doing karate up until 2 weeks ago!

Well, (After a lot of prayers) he is almost 11 years old,so surgery, finally. Just last week had the Ross procedure. Again, we were so scared, as there is so much (too much) information out there confusing our decision. Anyway, I wanted to post here, because we have been in that terrified position, thinking the worst, with doctors telling us that surgery is imminent.. but doctors can be wrong! Our son went almost 11 years before needing surgery. Then there was the question, which surgery? Do we go with the 'tried and true' mechanical valve (less risky) yet commit him to being on blood thinnners for the rest of his life, or do we go with the Ross (not as many surgeons do it, and it is a lot more complicated with seemingly more that can go wrong)?

As for the surgery- YES, the surgeon and the hospital make ALL of the difference!. Our own pediatric cardiologist did NOT recomment the Ross... but after praying, and watching our (extremely active) son, I could not imagine him on coumadin, as he would bump into something and bleed within the first 24 hours! We had to take into account his personality and tendancies. That, and we wanted to give him a shot at a 'normal' life, not measuring his coumidin levels every few days for the rest of his life. It was a scarey decision, but once we made it, we knew it was right.
So, we decided on the Ross procedure, and wanted someone who was the BEST at it (He was not going to be a guinea pig for anyone learning). Our son had his Ross done by Dr. Spray at Children's Hospital in Philly (CHOP) and he was AMAZING. He is one of the best in the world, and the hospital lives up to it's number one status too. Every nurse, administrator etc went beyond what was necessary, and we know our son was in the best place he could be. He was up WALKING around the DAY after surgery, and went home on the 6th day. He is playing Wii right now, and arguing with his little brother about Skylanders, less than 2 weeks later. I am so thankful to God that He lead us to CHOP and Dr. Spray.... and that he had the Ross. Yes, it was scarey to wait, to think of all that could go wrong... but we just had to give our son a chance at just being a normal boy. We are so glad we did, and we will pray that this Ross holds for decades. Hope this helps... I so wish someone would have shared their experiences when our son was born, I was scared out of my mind...but at such peace now.

Sherri - posted on 07/30/2011

Hi Jessica, My son also has a small amount of backflow due to being born with funcitinal bicuspic aortic valve disease. I was told most likely he will live a normal life like all other children. he goes in once a year and they measure the blood flow with an echo. I am glad other moms have been told the same thing! I worry all the time but the doctor assures me things will be fine. I found this online as well:

In some people, only small amounts of blood leak back into the left ventricle. This normally does not cause any symptoms or problems. This topic focuses on the more severe cases where large amounts of blood leak back into the left ventricle.

Alyce - posted on 04/14/2011

Hi! A second opinion is never a bad thing. I have a son who has Ebsteins Anomaly ( Tricuspid Regurgitation with alot of other issues compounding the problem), Aortic and Mirtral regurgitation. My son is 16 and they told me he would never take a breath at birth. It is possible if it is mild for her to live a normal, happy and healthy life. We just found out that my sons heart is enlarged. But his Ebsteins is moderate/severe so surgery is looming in our future. Just let her behave as a normal child until your Cardiologist tells you any different. And I know that it is harder than it sounds. I pray you continue to get great reports from the DR over the years :)

Julie - posted on 04/14/2011

Hey Jessica,
It is hard to deal with. I Still sometimes have a good cry about it, and I have known about it for 7 years. Felicity knows she has heart problems, but doesn't really know the extent of it. I think she is abit to young to understand the severity about it all. She is aware that it does prevent her from doing a few things, running to much is a big thing for felicity she can't do it for too long, and the heat really gets to her. But she is aware she does have a "special" heart as we put it to her. It's probably a good thing for Isabella to be aware that she has a "special" heart as well. Just so that if she has to sit out of something because of it she understands why. Goodluck to you and Isabella, and if you ever need to know anything or just vent cos you need a shoulder or anything. I am always here. I know how tough finding out there is something wrong with your precious little girl's heart.

Jessica - posted on 04/13/2011

Hi Julie,
Thanks so much for your response. It's nice to hear another mom saying that a happy, healthy life can and will be an option. i guess I am also struggling with the fact that this is a condition that will require a lifetime of concern. I wish she could just grow out of it! We have not told Isabella about her condition because we did not want to concern her with it yet. Does Felicity know about her condition? I wish you and your children much health and happiness and will keep in touch. Again, I really appreciate your response:)

Julie - posted on 04/13/2011

Hi Jessica,
My daughter doesn't have the same condition as yours, she has tricuspid reguritation. She is turning 7 in September. Felicity was diagnosed with it from birth, and has surgery to fix it as well as other heart issues she has. I dont think if going for a 2nd opinion will help but if you feel thats what you need to do, then by all means do it. I can't compare notes with you, but i do know what you are going through and if you ever need a chat i am always here. I just want you to know that they are right, she can live a normal happy healthy life. I know my daughter is and will continue to do.