Pregnant and Scared! With BAV! (Newbie)

[Tiger]

Hello everyone!
I've been waiting for a chance to finally post my story! I was born with a mild heart murmur/aortic stenosis and always saw the cardiologist every two years with no issues. Well, life went on and I was always told this was not a big deal and maybe someday when I was very old I would need to get my valve replaced. I went about 3 years with not seeing a cardiologist bc some things happened in my life and my doctor had closed her practice. So i needed to switch Cardiologists, which never ended up happening. Then my husband and I decided to start a family and we were overjoyed to find out we were pregnant! I went to my first OB visit in September and she said I needed to have an echo done so I scheduled that thinking it would be no big deal.
Had the echo done and cardio. Appt at the end of November to find out some very startling/bad news! I was diagnosed with BAV with moderate to severe stenosis and moderate regurgitation. My cardio. Said if he knew it was that bad he wouldn't have recommended me getting pregnant until I had my valve replaced! And there was a chance I'd have to have the surgery while being pregnant! My husband And I were in shock and I was so upset and depressed. Unfortantely, I wasn't educated enough about my condition and never thought it would get this bad at such a young age!
So here I am, 27 weeks pregnant and very scared. I am being seen by high risk OB and have had my second echo last month which he said looked about the same and there are no signs of aortic dissection yet. The doctors seem to be leaning toward a normal birth with an epidural over a c-section but there are risks with both and I'm very worried!
I'm hoping I can get some support from some of you out there...I'm only 27 (just turned) with this condition. I just don't understand how it got so bad. I also haven't really had many symptoms either. I'm just hoping and praying I can get through this safely to be able to be with my newborn daughter and husband in April. Wondering if anyone else has went through this or has any advice. Sorry for the long post! This seems to be the only support group I can find online dealing with this issue. Thank you!

 

[escargome]

Hi Tiger,
First welcome to the forum. I can understand your fear and hope that you will be able to learn as much as you can about your personal situation and the various options you may have. Why did the OB mention aortic dissection? Do you also have an aneurysm along with the stenotic valve? I can't say that your heart situation is the same as mine, but I gave birth to a son at age 25 and a daughter at age 27. So just do what the doctor's tell you and keep us updated. I hope all works out well for you and your husband. Oh yea, I didn't get my valve replaced until I was 56 (go figure)

 

[Tiger]

Thank you. It was actually my cardiologist who said there is no aortic dissection yet. And no I haven't had an aneurysm. But I am worried about getting one! How severe was your valve? Did you have a normal birth or csection with your children?

 

[ski girl]

Tiger I work in a hospital that deals with all the toughest pre-term infant cases in the state. Our doctors resuscitate babies born at 22 weeks weighing about a pound and an awful lot of them do completely fine. So if you are worried your baby may be in danger, don't! Obviously the longer you can wait before giving birth the better, but you're already much further along than a lot of the littlies we get. I hope that can put your mind at ease on that front!

Now, for you - I had severe AS and a BAV for about 20 years before anything needed to be done, and that was only because the symptoms were getting in my way as a competitive paddler. So unless you have symptoms such as shortness of breath, etc. you're not in any danger (in my non-medical opinion).

Being anxious about everything isn't going to help you or the bub so it's worth you discussing that with your GP and getting some strategies to deal with any anxiety you may have - but you're doing all the right things and if they're suggesting a normal birth then you're much more OK than you think you are!

Good luck (and hugs) from down under!

 

[yotphix]

Hi Tiger,

Congratulations on the pregnancy! My wife and I are expecting any day now. Exciting times!

Obviously none of us are doctors but it would be interesting to know what the stats are from your echo. Things like valve opening area, ejection fraction, pressure gradients, any L.Ventricular Hypertrophy, etc. so that we could compare them with our own. Sounds like you're not really in a condition yet where anyone would be recommending surgery anyway, but maybe the stats tell a different story?

Not all BAVs come with an aortic bisection, by the way. My aorta is still just fine, for example. What's more, moderate to severe stenosis with moderate regurgitation was the characterization applied to my valve when the problem was discovered, nearly 10 years before surgery. Even when I presented with mild symptoms 10 years later the surgeon offered that we could do it any time within the following 6 months, and then only to maximize the chances for the LV to return to normal size.

As scary as this all sounds, the fact that they're talking about a natural birth suggests they aren't super worried about any acute problems.

Paul

 

[AgilityDog]

Hi Tiger!
When I was in the hospital with a my AVR in 2010 there was a young lady who had received an emergency AVR and aortic graft who was also several months pregnant (5-6). She was up walking a day after me, though she had been incredibly fragile. Mom and baby were just fine. It can be done, if need be. I know you are scared, but you are in good hands - you and your doctor are AWARE, and you will be watched closely.

 

[escargome]

Thank you. It was actually my cardiologist who said there is no aortic dissection yet. And no I haven't had an aneurysm. But I am worried about getting one! How severe was your valve? Did you have a normal birth or csection with your children?

By the time my valve was replaced it had become calcified enough that it fell apart in the surgeons hands. I didn't really get all the numbers for I had my surgery. I had my surgery in May 2008, but only after having bacterial meningites in Jan 2008 with the accompanying 8 weeks of PICC delivered anti-biotics. Anyway, I just wanted to get it over with.
As to my pregnancies, they were both routine, delivery was normal and without drugs of any type. Au Natural as they said.
So like I said, good luck to you and your family. Just follow the doctor's instructions and you should be fine.

 

[Superman]

It was actually my cardiologist who said there is no aortic dissection yet.

Like others have said - without numbers, we couldn't tell really anything. The above quote is an odd thing for a cardio to say. As I understand it, dissection means either immediate surgery or death if you can't get to an operating room. An aneurysm is simply a dilation of the aorta. Did they mention if your aortic root or ascending aorta is dilated at all? If so, did they give you a measurement? 5 cm (with some debate either way) is typically the bench mark for considering an aortic graft in an effort to avoid dissection.

I would think the physical effort of vaginal delivery would be out of the question and they'd be scheduling a c-section if there was concern over an aneurysm or aortic dissection. Like another poster said - if they're not scheduling a c-section, I wouldn't be overly worried. Even if they do - you'll know that they are on top of things and making every effort to avoid taxing your heart too much given the circumstances.

Congrats on the pregnancy and enjoy your growing family! I have five wonderful children. Good times.

 

[Tiger]

Thank you all very much for the support!
Sorry, I am new to all these terms I guess I meant to say that he said there is no dilation seen yet from my Echo results. Also, I know from my last echo the pressure gradient was 40mm and ejection fraction is 70% I am not sure what these numbers mean.. ?
My thoughts were that a csection would be safer also, but I guess they are worried about my blood pressure dropping very low fast which they say could be really bad with my condition. I will be meeting with my cardiologists soon in feb and hopefully we can come up with the safest plan.

 

[pellicle]

Hi

I will be meeting with my cardiologists soon in feb and hopefully we can come up with the safest plan.

which is a good thing. Be calm and keep focused on the fact that we know heaps more about the biology of the body than even 20 years ago and that what once have seemed a miracle can now be done.

I'm sure you'll be fine, but I'll keep my fingers crossed for you.

 

[Kitty]

Hi!

I've just turned 30 and have just been through a very similar thing with my first pregnancy. I have a bav with severe stenosis and moderate regurgitation. My condition has always been monitored fairly closely. After seeking advice from a number of doctors i got pregnant (my bubs is about to turn 1).

I managed to get through it ok. I have up work a lot sooner than I wanted and spent most of the last 2 months lying around the house. I wasn't allowed a narural birth I had to have a ceaserian in which they took a few extra precautions like they put in an aterial drip, they also have me part epidural and part spinal block rather than a straight epidural something to do with being able to betrt control it and not wanting to drop my heart rate too quick and I spent 24 hours in intensive care afterwards.

During my pregnancy we talking with the doctors about perhaps needing to do the surgery while pregnant (I kinda got to 30 weeks and then started getting symptomatic) also of delivering bubs early and then doing the surgery. In the end she was delivered at 37 weeks and its now nearly a year later and I'm booked to have surgery in 3 weeks

It can be so scary and overwhelming and I remember saying to my partner "why did no one tell us this could happen?". In the end we just had to trust that the doctors new what they were doing and with the help of my cardiologist, an amazing high risk ob (who specialised in heart conditions and pregnancy) and som wonderful midwifes I got through.

Please message me if you have any questions

 

[Kitty]

Hi!

I've just turned 30 and have just been through a very similar thing with my first pregnancy. I have a bav with severe stenosis and moderate regurgitation. My condition has always been monitored fairly closely. After seeking advice from a number of doctors i got pregnant (my bubs is about to turn 1).

I managed to get through it ok. I have up work a lot sooner than I wanted and spent most of the last 2 months lying around the house. I wasn't allowed a narural birth I had to have a ceaserian in which they took a few extra precautions like they put in an aterial drip, they also have me part epidural and part spinal block rather than a straight epidural something to do with being able to betrt control it and not wanting to drop my heart rate too quick and I spent 24 hours in intensive care afterwards.

During my pregnancy we talking with the doctors about perhaps needing to do the surgery while pregnant (I kinda got to 30 weeks and then started getting symptomatic) also of delivering bubs early and then doing the surgery. In the end she was delivered at 37 weeks and its now nearly a year later and I'm booked to have surgery in 3 weeks

It can be so scary and overwhelming and I remember saying to my partner "why did no one tell us this could happen?". In the end we just had to trust that the doctors new what they were doing and with the help of my cardiologist, an amazing high risk ob (who specialised in heart conditions and pregnancy) and som wonderful midwifes I got through.

Please message me if you have any questions

 

[deogloria11]

Tiger,

I hope everything is going well for you. I went through a similar--but much worse--situation, and everything came out fine!

I was diagnosed with a heart murmur after baby number 3 was born. i have 6 children--all were c-section because the first one was a c-section, for the second I had pre-eclampsia, then no doctor after that would give me a VBAC (which turned out to be a good thing, given what condition I ended up having). I'd had chest pain, and went in and they discovered the heart murmur. Got an echo, went to a cardiologist, who told me I probably had rheumatic fever as a baby and didn't know about it, that I had mild stenosis and moderate regurgitation, and would need valve replacement in about five years. Had an echo right before the births of babies 4 and 5, and before baby 5 I had bad abdominal pain (unrelated) and they did an echo and also an MRI to check for an aortic dissection, which they found none. The MRI tech noted the size of my aortic aneurysm at that time, but no one thought it important to tell me I even HAD an aneurysm. A year later I started having shortness of breath and strong chest pain upon exertion (even picking up my 1 year old). Around that time I had discovered bicuspidfoundation.org and realized that I had all the symptoms of BAVD. When the chest pains started, I just KNEW I had an aneursym. I knew it was right above my heart, and my gut told me it was probaby big, around 5cm. The website recommended insisting on a CT with contrast, not just an EKG, and there were stories of people dying undiagnosed after getting sent home from the ER being told they had anxiety. I went to a convenience care clinic hoping for a referral, the old doctor practically patted me on the head and told me to relax, I was too young for an aneurysm (WRONG) and if I really felt like I needed it, I could call a cardiologist. (What an asshole.)

So I ignored him and drove to a big city hospital that had a heart hospital attached, assuming I'd get better care there. (WRONG) I never even saw a doctor. They did an EKG, let me sit there for three hours, then tried to send me home. I told them I was REALLY uncomfortable going home without a CT with contrast. I think they got the hint (liability, anyone?) so they reluctantly did the CT, and boy did their attitudes change. I had a 5 cm aneurysm right where i said it would be. They scheduled me with a cardiologist the next day. Cardiologist did some more test, and I followed up with him in a week, at which time I had to tell him that I found out I was pregnant. (I now believe that the hormones from pregnancy--which can stretch connective tissue--worsened my condition, because that's precisely when the pain started.) He said he'd have recommended surgery, except that being newly pregnant, the baby would probably die. So I was monitored by a perinatologist and my cardio very closely. Toward the end of the pregnancy they had me on a beta blocker, and I could barely walk from one end of the house to the other, I was so tired and out of breath. They took the baby by c-section a month early. She was fine, in the special care nursery the first few days, but all she really had was erratic blood sugar and maybe a bit of erratic breathing. They did the c-section in the cardiac operating room, just in case everything went south (yeah, nothing like being trussed up like a naked thanksgiving turkey in front of twenty strangers. :redface2: ) Word to the wise--make sure the person doing your central line in your neck isn't a newbie! Ouch. Anyway, about a month later, my blood pressure started going up, chest pain got worse, and my cardio freaked out and sent me in for surgery (they originally wanted to wait at least three months post-c-section to do the repair, because you're already at risk of emboli within 3 months of a surgery and within 6 weeks of giving birth).

So I had my valve replaced with a bovine heart valve (love it, no coumadin or clicking) and had a graft for the aneurysm. came through it well. Worst part was waiting for them to take out the damn ventilator tube, then the chest tubes. Pain was a bitch, but bearable. What sucked was that I pumped for four days, even with all the pain and my incredibly sore arms and chest, and the day I checked out, they were like "oh, you can't breastfeed anymore, because you have to take baby aspirin every day and it's not safe for baby." Jerks. I had specifically asked about post-op meds and breastfeeding beforehand. In the end, I was able to go off baby aspirin at 6 weeks, so if they had informed me better, I could have pumped and dumped for six weeks, then attempted to resume breastfeeding.

So I was fine, baby was fine, everything went pretty well, considering. I hope that makes you feel a little better. Hopefully you can last as long as I did. If you really don't have an aneurysm, you're probably better off than me. I hope they REALLY checked you for aneurysms good, because I went through tons of echoes and they never found it til the MRI (and then never told me). It was finally diagnosed for real when I insisted on that CT (which you don't want when you're pregnant, BTW, you want an MRI).

Anyway, hope this helps. It's a long, boring story, but I left it all in instead of editing it, because it's a lesson learned--trust your own gut, INSIST on being treated seriously and getting what you need, and don't trust anyone. DON'T. TRUST. ANYONE. Trust yourself. Many doctors and nurses are awesome. But some will do things wrong. They will tell you it's all in your head. They'll tell you a symptom you're feeling is unrelated to your condition. They'll prescribe medications that are contra-indicated for someone with your medical condition. They will forget to read test results, and let you go on your merry way popping out kids while your aneurysm grows and threatens your life. Trust YOURSELF. Research. Never take a med til you look up the side effects and contra-indications for that drug. ALWAYS get copies of every test and scan right away and read it yourself. Had I done that after my CT scan after baby 5, I would have seen the note about the aneurysm. I could have gotten surgery soon after baby 5 was born, before it put me and baby #6 at risk. And I could have had all the facts before deciding to have another high risk pregnancy.

Good luck! I'm sure everything will work out fine for you. Keep us updated. If you are monitored well, chances are good both of you will have a good outcome! Just remember to be your own advocate. No one...NO ONE...cares about your health as much as you do. :smile2: *hugs*

p.s. I'm not a doctor and this is just my opinion, but personally I'd go with a c-section if you have BAVD, because your connective tissue was already stretchy, and pregnancy makes it stretchier, and pregnant women in general have a higher chance of aortic dissection without even having a condition like BAVD (rare, but it happens). So lots of pushing and spiking blood pressure? Yikes. I wouldn't do it. Now, that's just me, and I don't know what other risk factors you might have, and c-sections carry their own risks, and long-term side effects, which I think you should research. So only you can make that decision. But as the c-section queen,:rolleyes2: that would be my choice.

 

[Honda2964]

Tiger,

I was born with a bicuspid aortic valve and had a pacemaker implanted at 18yrs old, at that time my "stenosis" was moderate to severe. I got pregnant with my first son at 21, and was told by my cardio I should have never gotten pregnant, after many doctors appointments and meeting with a doctor who practiced all over the world with women with our exact conditions and pregnancy we decided to have a ceasection to better control the bleeding I would have to endure. I had a swan gans and an A-line to monitor pressures in my heart during and after birth. The anesthesiologist said the pressures were perfect the whole time. My cardio who told me I should have never gotten pregnant came in after seeing te numbers and told me to consult him prior to any other pregnancy. We got the ok and got pregnant with our second son at 24 during which I developed an ascending aortic aneurysm of 4.2cm (original size was 1.9) once again pregnancy went great, I had both catheters again and pressures were great. I just had my aortic aneurysm repaired and my valve repaired last week. If you have any questions feel free to ask, I know exactly what your going through

 

[Tiger]

Hey Thanks for all the responses! I am now 33 weeks pregnant and doing pretty good. Although I have been taken off work but I think it's for the better..I'm able to relax and get my much needed rest. I only have a month and 13 days left until my due date! Exciting but also scary bc of my condition! I am scheduled to have one more echo done a week before my due date just to make sure things are okay. All of my doctors claim that a vaginal birth with early epidural is the safest. I feel confused and worried about this though it seems like all of you had c.sections and made it through safely. My high risk OBs claim the c section is major surgery and would be more risky for me and my cardio doc just said according to some heart association statement they recommend a vaginal birth for people with my condition. I normally trust my doctors but I don't know if they are certain on what is the best choice...? I'm not really sure what to do :/
I really don't think I've had an aneurysm.. I've had 2 echos done in the last 5 months and they said there weren't any signs of one nor have I had any major symptoms. Can you get an aneurysm without knowing it?
Well, thanks for the advice everyone! And wishing you a speedy recovery Honda!

 

[Madsometimes]

Good luck with your pregnancy. It sounds like you are being monitored very carefully, so I think you should be fine.
I had two pregnancies with BAV plus an aneurysm that was 4 cm at the end of my first pregnancy and 4.4 cm at the end of my second pregnancy (was told that section would be needed at 4.5 cm). Both labours were inductions at 39 weeks, delivered vaginally although I was restricted on the pushing stage. I was at a central teaching hospital for both, which had cardiac surgeons on-call.

I didn't get an epidural for my first labour because it was so quick (2 hours from induction). By the time that the anaesthetist arrived, I was fully dilated and my baby was born minutes later. For the second, I had a very bad reaction to the induction where my womb went into a hypertonic contraction, and was rushed into theatre for an emergency section. The doctors administered drugs to normalise my contractions, so the section wasn't necessary. I had been given the full spinal anaesthetic, so my labour was pain free. Unfortunately, I couldn't feel when to push, so needed a ventouse delivery.

So do not worry about labour too much. Your doctors are aware of your condition. You will get a section if you need it for obstetric reasons, but equally they do not want to put you through unnecessary surgery. Although you certainly can have an aneurysm without knowing it, you have had several echoes, so it would be detected by this test. Women with heart problems who are not being screened carefully have more to be concerned about than you, because you are being monitored carefully.

I was told not to have more children once my aneurysm reached 4.4 cm. It was a further eight years before I reached 4.8 cm, when I had surgery.

 

[michela]

I have had a 4.5 aneurysm with my BAV since 2008. It hasn't changed at all, so my doctor felt comfortable telling me to get pregnant in 2011. I did and had a scheduled c-section because they didn't want me pushing. I had an arterial line during my cesarean and had a cardiac anesthesiologist do my spinal block. The surgery went perfect, my recovery was just fine and I went back to my routine beta-blockers soon after birth (I was off them for the duration of the pregnancy). I continue to have CTs or MRIs done every six months and my aneurysm still has not changed, nor has my stenosis worsened. My son is 17 months old and my doc says I can get pregnant again any time I feel ready. I tell you this so you understand that even some bodies with aneurysms and stenosis can handle pregnancy (and in my case, surgery) just fine with no setbacks. Good luck!

 

[KateM]

Hi Tiger. I was 29 when pregnant with our daughter and I have BAV with moderate stenosis and regurgitation. At the time my stensosis was considered mild-moderate and my Ejection Fraction was 65. I did fine with pregnancy and overall I did well with delivery. They induced me at 39 weeks...my labor was really long and I pushed for a long time because of the position of her head (apparently she was face up). My pressure did drop about 15 minutes after delivery but they gave me some medication that corrected it quickly. THe annoying part for me was my shitty cardiologist never called to check up on me after I delivered and that's when I had quite a bit of swelling. Looking back I should have called the office but I had total baby brain! ha. So overall...I did fine (even though there were a couple of bumps). My advice make sure you have an appointment with your cardiologist the week you deliver and call if you are noticing ANY swelling in your hands and legs. This way he/she can check up on you and make sure you are fine. It's easy for new moms to forget about themselves! ha.

Congrats on your new addition! It's such an exciting time! It sounds like you have very tentative cardiologists following you...so that should make you feel good!! As you see...there are many of us BAV ladies out there who have had healthy pregnancies with beautiful healthy babies. Thank goodness for modern medicine!!! Feel free to message me with any questions!

 

[Tiger]

Thank you so much ladies for sharing your stories and the support! I feel a lot better about things now. I had another echo done last week and good news is the condition is stable for now and no signs of an annerysum! I am 39 weeks and my due date is Tuesday!! The OB doctors are going to let me try and go naturally instead of inducing me since me and the baby are doing well. I can't believe I will get to meet my baby girl soon! it has been a long, hard pregnancy finding out how serious my condition was and all the worry and waiting. It's really comforting to know that there are others out there that have went through the same thing and made it through safety! I will have to update you all after I have her! Thanks again for the advice and support!

 

[ccamp708]

I suppose your baby may have arrived by now, but if not, let me encourage to trust the opinions of your doctor. I have congenital aortic stenosis (bicuspid valve) and have 2 beautiful children, both of whom were delivered naturally. In my situation at the time the stenosis was moderate. I delivered my son at 38 weeks in January 2009 (age 26) and my daughter at 39
Weeks in December 2011 (age 29). I was induced due to elevated blood pressure in that last week of pregnancy, but with my daughter I was actually in labor and didn't know it. Both deliveries were closely monitored (arterial line and telemetry after delivery), and both were delivered with forceps. I pray things will go well for you and look forward to hearing your story. Last Wednesday I did have my valve replaced. A long story for another day. I am blessed to have excellent medical care my entire life and most recently the opportunity to be followed by an adult-congenital specialist. Blessings to you and your family!
Carrie