My daughter has BAV with Regurgitation

Advertise with us
shop deals on amazon
Shop deals on ebay
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
P

PCGeekz

Hi I'm new here.

I found this site a little bit ago but haven't really been here. It's really hard for me to face the fact that my daughter has this. She is 18. We've known for almost 2 years now that she's had this. She goes in for MRI's every 6 months and has had other tests on a schedule as well. I"m scared sick for her and when I think about this it makes me want to cry. Long story short her Dad passed away before she was born (don't know cause) and she is my one and only child and we are absolutely best friends, more than Mom and Daughter.

I'm just hoping you all can help me out with calming myself down. Even being here typing and admitting to others she has this... makes me want to cry. I don't want to offend anyone, I just need hope! My daughter will be starting college just 20 miles away from home so she chose to live at home at least freshman year. I'm hoping she meets a nice guy while at college and someday raise a family.

My first real question here is... have any of you with this disorder had children, more than one, only one? Surgery before children, surgery after? I guess my question is more related to women here, because I worry about her carrying a baby and having her heart work harder. What about sports or just biking or jogging? I don't know if I should try to limit her to only so much activity, what have you all been told?

Her doc is great and this last visit made a reference to "when you have children we will talk about surgery". So I know having kids is possible and I know adoption is always an option.

Can anyone help me my question... ok questions, guess I didn't know there was more than one. =) I have many more questions, but will leave it at that for now.

Thanks in Advance.

Kat in WI (approx 20 miles north of Milw)
 
I had my BAV replaced in 2005, and we also found out that year that our youngest son has a BAV. He was 19 at the time.

He's being monitored, but so far, no problems.

Regarding what your daughter can, and cannot do, what does your cardio recommend? I would follow his lead.

I understand how you feel. I would gladly have the replacement for our son if I could.

I'm glad you found us.:)
 
I just wanted to welcome you ... I am not in your shoes but and do not have a lot of answers for you but I do know that you have come to the right place ...
 
Welcome to the group. don't feel bad about crying, all of the mom's on this forum understand. I don't have a lot to offer on the female thing. Feel free to ask any questions that you have.

I have a couple of questions for you. Is she symptomatic at all? It sounds like the doc thinks surgery is quite a ways off. Check with her doc about exercise, she can probably do most everything except for heavy weight lifting.

Good luck and keep us posted.
 
Welcome! You have found a place to ask all the questions you want to ask. As a mother of daughters I understand your feelings. My husband had a BAV and an aneurysm repair last September. He was 51 at the time, and his BAV had never been detected. Our daughters (ages 20/25) each had an echo soon after his surgery and fortunately, they each have a tricuspid aortic valve.

Your daughter is so blessed to have a precious mother. I want to encourage you to learn everything you can so that if she faces surgery, you will be as prepared as possible. Knowledge is power and comfort in this situation.

I am sure others will be along with experiences to assure you about your daughter. Again, welcome.
 
Hi Kat in Mn. Stick around this forum and ask your questions. This is an excellant source of info and support.

I think I really became aware of my murmur when I was in my teens. At that time there really wasn't much that could be done to "fix" heart valves thru replacement. Today, OHS(open heart surgery) is common and is performed thousands of times each year. I finally was able to have the surgery when I was 31. In about six months I will be 73 and I still have that same valve. I also enjoy my life and have had a fully normal life.

It does sound like your daughters' surgery is still sometime in the future. The science will continue to progress. Stay informed, but live a normal life untile the time comes. She will be fine and she should be able to live a normal life, have children, et.
 
Welcome Aboard Kat !

First, it sounds like your daughter's Cardiologist is keeping on top of her condition with semi-annual MRI's. That is the BEST way to spot problems in the Aorta (i.e. aneurisms).

It may be prudent to do some pre-emptive Surgeon Shopping to find a surgeon with LOTS of experience doing Surgery of the Aorta (which is way more complex than most Heart Surgeon's get into) 'just so she will be in experienced hands' when the time comes.

Some of the Top Aortic Surgeons are:
Dr. Kouchoukos in St. Louis, MO
Dr. Sundt at Mayo Clinic in Rochester, MN
Dr. Ryan in Dallas, TX
Dr. Pat McCarthy at Northwestern in Chicago is Ross's favorite Heart Surgeon ("stolen from Cleveland Clinic" per Ross)

We have a few members who have had children after Valve Surgery. The 'safe' route is to get a Tissue Valve the first time to avoid the necessity of anticoagulation therapy (required for Mechanical Valves).

The 'Down Side' of Tissue Valves is that they 'wear out' in time (anywhere from 8 to 20 years depending on type and age at implant). The 'other down side' is that Tissue Valves wear out faster in younger patients.

Our member "MNmom" got 10 years and 2 kids out of her Tissue Valve before receiving a Mechanical Valve (which should not wear out in her lifetime) earlier this year. See her earlier posts for "the rest of the story".

Keep reading here in the BAV and CTD Forum for more stories on how others coped with these issues.

And feel free to ask any Questions that come to mind.

'AL Capshaw'
 
Count down

Count down

I am 25. I am a male, but have read a lot and I know, that it is not that scary at all. I won't say it is easy, but I say it is not scary!

After my surgery last year I have came back to the top of the activity! I play soccer and tennis. Last week I climbed the most high mountain in South-Eastern Europe (3 000 meters) and even spent the night up there. Interesting was the fact, that I was so motivated, that I reached the flag first from the group.

Regurgitation of the aortic valve in bicuspid aortic valves is usualy progressive. This commonly leads to the point, where valve replacement is needed. In cases, where a girl needs replacement before her pregnancy, they put biological/tissue valve, because the anticoagulation therapy may deteriorate the embryon.

The disadvantage of the bio-valve is their short working life, compared to the carbonic valves. While the seconds last practicaly lifelong (what is proved, because there are still working valves, implanted in 1962), the others last from 10 to 20 years, depending on the patients age (older the patient - slower the valve-deterioration rate).

One is for sure - if you woth your doctor catch trhe right moment for surgery, when needed - it all will be fine. If surgery is not needed, than the regurgitation by itself doesn't disturb the pregnancy (I have read a research about).

An important thing is: BAV are associated with higher rate of aortic wall complications - some of them are genetical, some are biomechanical, some are inflamatory. Thus it is very important to evaluate the aortic dimensions and elstic properties (the second through a pulse wave doppler) to estimate the possibility of future aortic complications.

P.S. If you are more interested of the aortic regurgitation pathology, I have put a thread about, somewhere in the :bicuspid section".

Here I found it and extracted what you may need:

Aortic regurgitation in the BAV valvers is commonly caused by a root dilation. Often, a change in the diameter and shape of the sinotubular junction may pull the valves comissures/leaflets to the point where they can not coapt well (insuficient closure). However, a dilatation in the S.Vals. doesn't nessecery means a STJ dilatation. It means more commonly an aortic annulus dilatation - the result of it is regurgitation. Regurgitation may also be caused by a leaflet restriction, when a fibrous thickening occures in result of the altered haemodynamics of the valve (you know, that if you are BAV, your valve has worked inproperly since your first heart beat). The aortic regurgitation is usually scaled from 0+ (trace reg.) to the great 4+ (where the valve almost doesn't close). Actualy, a reg. scaled at 2+ is called "moderate" and is very well tolerated by the myocardium with different mechanisms, called cardiac reserve.

One of these mechanisms is eccentric hypertrophy (by aortic stenosis it is concentric). Then your heart muscle becomes thickener (stiffer) to take the overload of the regurgitant volume.

Even if the regurgitation becomes more severe and hit the 3 -> 3+, your myocardium still may have the tolerance. However with the time, the extra blood volume will make it "tired" and slowly it's abbility to pump sufficient all the blood will begin to fall down. Years ago, a surgery was admitted, when the ejection fraction falls under 46-49%. Nowadays, the echocardiography follows quite different values of the hearts work, like intramyocardial velocities, fibre-shortening, fractional shortening... and surgery may be warranted at an earlier stage, to prevent a myocardial damage.
Click to expand...

Best wishes,
Ivo
 
Welcome, you have found many friends and a great support group with a lot of collective knowledge and experience.

As a very young lad, I was diagnosed with having a heart "murmur". It wasn't until I was 17 that an extensive (for it's time-1978) examination determined a Bicuspid Aorta. My parents were always told to let me be and place no restrictions (physically), which they didn't, nor did I. With that exam, I was told by age 30, the valve would have to be replaced.

I've monitored my condition lifelong at roughly 5 year intervals. Until this year, I have had no symptoms whatsoever. This year, symptoms have become subtle which put me into action. With extensive testing and evaluation, it was determined that now is the time for me to have a valve replacement (I am 46).

I had it done on 8.8.08; and just two weeks later, I feel a big difference. Because the timing was so perfect and I suffered no heart attach, there was no compromise to the heart. I look forward to a long life with my new mechanical valve as many members before me have done.

Pregnancy is a physical stress that men do not have to factor in and I appreciate your concern. Were your daughter to become pregnant, I'm sure her heart condition would be taken into account throughout her pregnancy, labor and delivery.

I wish you and your daughter the very best.

Best regards,
-Alistiar
 
Kat, you are amoung friends!

Kat, you are amoung friends!

I had BAV with regurg diagnosis at about 13yo. I did ALL the usual kid things and all the usual guy things in High School. (f-ball, track, wrestling, weights, etc) when I was diagnosed, no mention was made about check-ups every year, 6 mos, etc. It was a "SOMEDAY YOU WILL NEED A VALVE REPLACEMENT" thing and that's all. At 41 y/o I went through the police academy without a problem. As a COP I took the bicycle class and have been riding on the very hilly streets of ATL. for almost 2 years. I was even riding and chasing down cars 2 days prior to surg.:eek: It was while trying to change departments that a Dr. said this REALLY needs to be checked out further. That set in motion a chain of events that had me in the hospital getting an ON-X valve put in. All this time though, I was NOT symptomatic. Sounds like your daughter is NOT symptomatic too. I went through all the above not to brag, but to show that EXERCISE is NOT to be feared just because of the diagnosis. It is in no way a DEATH sentence. The human body is wonderful at adapting to what it has to work with. As long as her doc doesn't restrict her (which I don't think he will) she can run, jog, climb Everest, swim the English Channel while handcuffed and pulling a boat. (OK that may be a bit much) but you get the picture.
Don't worry! we will continue to answer questions and give support.
 
PCGeekz said:
Hi I'm new here.

I found this site a little bit ago but haven't really been here. It's really hard for me to face the fact that my daughter has this. She is 18. We've known for almost 2 years now that she's had this. She goes in for MRI's every 6 months and has had other tests on a schedule as well. I"m scared sick for her and when I think about this it makes me want to cry. Long story short her Dad passed away before she was born (don't know cause) and she is my one and only child and we are absolutely best friends, more than Mom and Daughter.

I'm just hoping you all can help me out with calming myself down. Even being here typing and admitting to others she has this... makes me want to cry. I don't want to offend anyone, I just need hope! My daughter will be starting college just 20 miles away from home so she chose to live at home at least freshman year. I'm hoping she meets a nice guy while at college and someday raise a family.

My first real question here is... have any of you with this disorder had children, more than one, only one? Surgery before children, surgery after? I guess my question is more related to women here, because I worry about her carrying a baby and having her heart work harder. What about sports or just biking or jogging? I don't know if I should try to limit her to only so much activity, what have you all been told?

Her doc is great and this last visit made a reference to "when you have children we will talk about surgery". So I know having kids is possible and I know adoption is always an option.

Can anyone help me my question... ok questions, guess I didn't know there was more than one. =) I have many more questions, but will leave it at that for now.

Thanks in Advance.

Kat in WI (approx 20 miles north of Milw)
Click to expand...
Kat, your introduction was beautiful. I feel like that about my sons. They are a joy and a delight to me.

Sometimes with a BAV there are other issues and I had one of them, a coarctation of the aorta that had to be repaired shortly before I was 18 a few weeks before I began college. I recovered quickly from it and a nice man like you mentioned asked me to marry him and we got engaged.

The following is only my personal experience and experiences with bicuspid valves vary greatly. My doctor then told me that I shouldn't have children, because of my heart and the danger to me, and I was devastated over it. We got married, only several months after that first heart surgery, and several months later I was shocked to find myself pregnant. While I lliterally slept for most of the pregnancy, and the doctors watched me carefully, I had no problems and had my first healthy son. A year and a half later, I had my second healthy son. But shortly afterward is when I first began having indications that the valve was having problems. I think my first indication was labile hypertension.

It was about twenty years after that before my valve was so bad it had to be replaced. I feel great now. But I also know that there is a possibility that bicuspid valves can occur in families. They don't always, but they can and/or other heart problems can occur. My sons are fine and apparently healthy.

Welcome to the site. You will have more questions. There may be lots of answers, and a variety of experiences, but be sure she is followed by excellent doctors and follow their advice. Take care :) .
 
Bicuspid valves are a congenital condition, so each and every one of us tht has one (or had one :)) had it from birth.

I was diagnosed in 1985 at age 30 with heart murmur, and it was so slight that my family doc had a hard time hearing it. about 7 years ago, I had a flu-thing that wouldn't go away, shortness of breath, tired after walking 2 steps and so on. ended up in ER, doc there id a double-take, said he could hear my "very slight" murmur as he walked in the door of my room. Since then, was followed annually with echocardiograms and cardiologist visits. about 18 months ago, was referred to a surgeon and on September 6th last year, and much to the surprise of the surgeon apparently, he found a bi-cuspid valve. I was 52 at the time. Made a wonderful recovery, no bumps in the road, and was working from home a week after surgery, and within 3 weeks opened my first retail store!

I had no restrictions placed on me until 6 months before surgery, and then it was just not to lift anything over 5 lbs (which varies by cardiologist, some say 10, some say 20, some say 50.). As far as anything else went, I was just not to strain myself.

I am sure it is hard for you as a mother to accept this - I know mine had a hard time of it, and I was 52, not 18 - but it is NOT a "death sentence" any more, and full recovery from surgery is the norm. Just don't let it go too long, make sure she is followed up by a GOOD cardiologist - I am sure if you have read enough threads, you will have figured out that they tend to be a lot more conservative than surgeons - don't wait until the heart is damaged before doing anything about it and I am sure her life will be just fine and normal. OK, so she may not be able to be an astronaut, and there may be other choices not open to her, but how many of us get to be astronauts anyway??
 
Hi ~ I have no answers for you, but i wanted to join the others in welcoming you to the site. I hope everything goes well for your daughter for many years to come.
 
You all are wonderful people! Thanks for reading my post and commenting. I do feel better with all the success stories. I will keep reading this and other posts and get more informed. My daughter does have an enlarged heart and right now the real only thing we were told she can't do is lift heavy things. We were told if she grunts to lift then it's to heavy. She keeps bugging me about going on rollercoasters and it scares me to say she can. I'm worried about negitave G and if it could do any damage.

Thank You for all your comments and posts.

I know you will all be great resources for us in the future.

She starts college in just one short week (yikes) to become an art teacher so we don't have to worry about astronauts. =)
 
Just wanted to say welcome...you have found a great place, full of good people with lots of useful and valuable insight.

Kindest regards
 
I have a 17 year old daughter, my only child also. I had my bicuspid aortic heart valve all my life, much to my surprise. It is now repaired. I am scared to death she has my heart problem, her color does not look good to me lately. May I ask what symptoms your daughter had? I would like to get her checked for this but I need to get her doctor to order the echo to be done. Dont be scared for her at least you know she has the problem and there are ways for it to be treated and fixed if needed. I know how hard it is for you. Take Care.
 
You must log in or register to reply here.

Latest posts

Back
Top