For Women only.... Pregnancy with Aortic Valve

[mmcbroom]

I am trying to start my family. Doctors have given me to go ahead to try. But I will obviously be a high risk case. Medications will need to be changed, monitoring will be more often, etc....

Is there anyone who is or may have been in this situation?

 

[KimC]

Monica,

Welcome to VR.com! You've come to the right place. A few women who frequent these boards have had heart valve conditions and pregnancies.

I can only speak for myself, and I'm perhaps not the best person -- I haven't had surgery, I'm under monitoring for moderate AI and TI.

I've had three beautiful, healthy children, but my last pregnancy was very, very difficult at the age of 36 and I almost didn't make it. Granted, I'm a little older than you, but pregnancy and aortic valve disease can be life-threatening, especially stenosis. Again, you're younger, and it looks like from your history that your valves have been repaired?

How do you feel? Do you have any symptoms of heart failure? In my research on this subject, if you've ever experienced heart failure (or cardiomyopathy), then you should not get pregnant.

Bottom line, I would ask for at least two, if not three opinions from an OB-GYN who specializes in High Risk cases like yours, i.e., heart valve disease, and also ask for an opinion from another cardiologist. Two heads are better than one!

You can search on "pregnancy" on these boards and read my personal story on the front page of VR.com under KimCaroline.

You have a very, very personal decision to make, and it sounds like you understand the risks. I wish you and your husband the best. Please keep in touch.

God bless,

 

[catwoman]

Monica:

Did I see right -- that you have a St. Jude mechanical valve?

 

[Lisa in Katy]

If you take Coumadin, it's very difficult to maintain a pregnancy. Even on Heparin, I know that a lot of women have had problems. I see St. Jude's in your signature, but if that's a St. Jude's homograph, I'm not sure if you take Coumadin.

If you don't take Coumadin, you're probably better off than those of us who got pregnant pre-surgery because your valve is "fixed" and in good shape. My valve was crap, and I had two good pregnancies. The first one, at 28, was textbook beautiful. In fact, my blood pressure was lower than ever before. The second one, at 30, had some problems, but none were really due to my heart problem. I did have some high blood pressure, but not dangerously high.

Good luck.

 

[mmcbroom]

Hey all...

Hey all...

Thanks for the responses....

I appreciate all the responses.

As for my vavles, I have a Mechanical Aortic Valve (St. Judes) and a homograph Pulmonic valve. At my last echo/cardio appointment, I was still doing good. In fact all of my numbers, pressures, regurg, etc had all gone done since the previous 6 months and 1 year appointments.

Prior to last surgery, I had developed pulmonary hypertension with led to heart enlargment, and other things which forced the doc to look at heart/lung transplant. That was November 1999. Had surgery in May 2000 and by Jan 2001 was cleared to proceed with pregnancy by a team of docs including the TS, adult cardio and pediatric cardio's. In fact at my 6 week checkup after surgery, things had pretty much gone back to normal. And I never really had any symptoms then or now except getting sleepy if I don't get my 8+ hours sleep at night.

I have worked with 3 different High Risk OB's, been on Heparin injections for periods of time in the past, all that good stuff and still nothing.

And on top of all this, my body doesn't like coumadin. My monthly cycles are extremely lengthy and heavy. Is this the cause?? The meds??? In fact been hospitalized with blood transfusions due to blood loss that way. So they put me on birth control, but that is even contraindicative with coumadin. But the lesser of 2 evils I guess.....

Anyways...
Thanks Everyone!
Monica

 

[Karlynn]

Hi Monica
Welcome Welcome!

I thought birth control pills were contraindicative for any heart issue. They can cause clotting.

I had 2 children before I had my valve replaced. It was my second child's pregnancy that really tanked my valve. (And there are many in this forum with similar experiences) I had no symptoms of the prolapse prior to that pregnancy. Pregnancy is very hard on your body.

You have a tough choice to make because at this time we still can't look into the future. We have another new member who is trying to decide the same issue that you are. Pregnancy or not. Have you considered adoption? I don't say this lightly. I just know how impacted my children were when they were a toddler and baby and my health was terrible. It was very hard on all of us. I still carry some guilt for putting them through such an ordeal, even though I had no control over the situation.

I am surprised that the doctors who were considering a heart/lung transplant now give the go-ahead for pregnancy. Remember that the doctors that have given you the go ahead don't give you guarantees and they won't be around to help you care for your child, should the pregnancy do harm to your heart.

That being said, we all have to make our own choices, based on our own educated research and more importantly, the leading of a higher power than ourselves.

My "advice" is easy for me, as I have 2 children. I am not in your shoes and I didn't have to make such a choice.

Best wishes and God bless,
Karlynn

 

[Mara]

I have been on the pill both before and after my surgery, I just take an 81 mg aspirin a day. so far, no problems.

I too, have been told that maintaining a pregnancy while on coumadin or heparin is very difficult. Before my surgery I was told to be very careful not to get pregnant because it would probably mean spending most of it in the hospital on a heparin drip. Since I had the Ross Procedure, I suppose I have the all clear to get pregnant, it's just that no doctor can give me the 100% heart problem free guarantee that I am looking for, so....I am not going to chance it. Sure don't want to end up with a second surgery this soon, or worse.

My understanding, too, is that it's not so much being pregnant as the delivery when your body has a huge fluid level drop, that's what causes problems.


I agree with Karlynn, It's a personal choice. For me, the cons outweigh the pros. Plus, I spent most of my life being told never to get pregnant because of my aortic stenosis. It's just never been an issue.

Good luck with your choice and I hope it all works out for you.

 

[mmcbroom]

Talk about advice....

Talk about advice....

Man it seems to range.

As to the fact of wanting children.... I have been trying with some help from docs, but obviously someone with higher authority hasn't been allowing that to happen. Maybe there is a reason??

And a pregnancy is never 100% problem free. A normal healthy women with no history still has a chance, be it a small one, that something will go wrong. The docs have given me a 5-11% chance that something could happen. But all the studies that are out there are based mostly on women who didn't know about a problem with their hearts, didn't take care of themselves or stick to their medication regime. The one study that actually gives specifics, only had 2 cases of Mech Aortic Valves. And it didn't give the stats based on just them. They were lumped with only 227 others with various different heart complications, with a pregnancy complication rate of less then 25%. Granted that is a lot. I mean 1 in 4. And then most complications were spontaneous abortions. I have never even gotten that far.

As for Adoption..... I have my name on 3 different lists. And I have been there for over 3 years. And I still haven't heard anything on that route either.

I guess I will just have to see what happens. And to through another klink into the mix, my husband is military and is heading over the the middle east in 3 weeks for 1 year. So if things are gonna happen they will soon, or I won't have to worry about any of it at all for a while.

Thanks so so so much for the welcome and the advise.....

 

[Mara]

Monica

It's a tough situation. I hope that things work out for you. Sometimes you do have to just leave it to God and trust what happens. "What's for you will not go by you." as my husband's grandma used to say.

Please tell your husband that we are very proud of him. Tell him Thanks.

While he's gone, stop by VR.com often. everyone here is great!

 

[KimC]

Monica, I'm w/ Mara -- stop by here frequently, and thanks to you and your husband for your military sacrifice. I have a neighbor who's in the Special Forces, and we make sure that his wife is well taken care of while he's away. I hope you have the same support system.

God bless,

Kim

 

[moonsmartie]

Hi everyone. I?ve got a BAV with only occasional symptoms, and at my last checkup was told everything was working fine. I?m 34 but have never been pregnant ? do you think pregnancy would be a great risk for me? I?ve never had any OHS yet.

 

[KimC]

Hello, and welcome to VR.com!

Do you have any regurgitation with the BAV? I've heard different recommendations from other members on this site with your condition. Some were advised not to have children. Every case is individualistic. Only your doctor(s) can advise you appropriately.

Pregnancy is not a benign condition. If you decide to try, you'll need to see your cardiologist as well as a high risk OB and neonatal specialist to monitor you and your developing baby. My leak was not severe, but progressed during the pregnancy and I became very sick.

I had to wear lovely maternity support hose and take baby aspirin after developing phlebitis, (blood clots are a higher risk for us). I kept my legs elevated for most of the pregnancy. Because I had been taking aspirin, I was told that I might need a blood transfusion during or after labor.

Regarding labor, I cannot emphacize how important it is to trust your instincts. Be assertive with your attending nurses and physicians, telling them exactly how you feel. Everyone's different; tolerance varies. To my cardiologist's surprise, my heart did not tolerate the stress of Labor, despite my fitness and low weight.

You'll need a strong support system if you become more symptomatic during pregnancy and postpartum. I spent most of the time in bed, save my walks which were an important component of my physical, spiritual and psychological well-being.

Check out these links for more info:

http://www.americanheart.org/presen...identifier=9601

http://www.heartcenteronline.com/my...s.cfm?ARTID=187

http://www.postgradmed.com/issues/2..._01/prasad.html


God bless,

 

[KimC]

If the links above don't work, then try searching on "bicuspid aortic valve and pregnancy" on the following American Web sites:

American Heart Association

e-Medicine.com

HeartCenterOnline.com

I hate technology sometimes! ;-)

Best,

 

[moonsmartie]

Thanks Kim, there's some very interesting information there - especially the heartcenteronline site. I've had a look through their info on pregnancy and it looks like I'll have to wait until my next appointment in September to ask the cardiologist before I know for certain, cos there are so many different conditions etc.

I'll be back to this board before then, so I can ask the doctor the right questions and stand a chance of understanding his replies..!

 

[cinda575]

If it happens it will happen. It may not be meant for you to have them right now. The man up stairs knows better than any DR.

P.S. coumadin will cause your periods to be longer because of the thinned blood,it seems like there is more because of that.

Smile