Pregnant with uncorrected hole in the heart

Was anyone pregnant with hole in the heart? Any problems? Any meds?

No problems at all. Two pregnancies without knowing there was a hole in my heart.

Two full term, successful pregnancies with two holes in the heart. Had antibiotics during deliveries. Experienced more fatigue than probably most new mothers and some irregularity in heart beat during one delivery, but no major complications. I guess it depends on the severity of the condition and general health.

Well I was. Did not know about hole.

First child. I had placental abruption. I had started to retain fluid, went to doctor, the old doctor of the group,he patted me on the head and said go home and do not eat any salted peanuts. That was a Friday. On Saturday night I got up in pain, all of sudden blood everywhere. Had a C section. We were okay but we were lucky. Daughter was 4 lbs. I told the doctors I did not feel good, but I was a first time pregnant, emotional woman to them.

Second child, My blood pressure was going up at the last. I had a C section, was going to try for a delivery. More than likely that would have been the end of me. We were fine.

Third child was always going to be a C section. I had to take blood pressure medicine.

I went to doctors and no one ever heard anything, ever thought about it might be my heart. I had palptations all the time. Everyone just thought they were caused by the thyroid medicine. (That went crazy when I was about 15.)

If they know about the hole I would think you would be watched closely and maybe you would not have the problems, but really most doctors still seem to not pay attention when we tell them we feel bad.

What do your doctors say?

I dont know yet, I am going to see dr next week. Am, but did you take blood tinners also? What kind of holes did you have?

Yes. I had two of our three children before my ASD repair which is was also before I even found out I had an ASD.

Further, I had my first child in a free standing birthing center - the only one in Brooklyn which means this was a birthing center NOT attached to a hospital. It was essentially a home birth. Our second we had in a birthing pool in our living room - home birth. I had midwives with both children - the same midwife was there for the birth of both of our daughters. At the time our daughters were about 6 and 4 roughly and we were trying for a third. I had a few miscarriages which prompted me to think something was wrong (I am also a professional dancer, had been healthy had healthy pregnancies and didn't have any problems getting pregnant or carrying my children). Additionally my migraines from high school had returned and I was meeting with everyone between a neurologist to a new primary doc to a fertility doctor.

My new primary listened to my heart and asked if I 'ever had the structure of my heart looked at' - I said no - and I was off to getting an echo. The echo revealed everything - Fenestrated ASD - I had it repaired within weeks. My interventional cardiologist knew my husband and I were trying for a third and said yes, we could still have children and yes, I could continue my career as a dancer. He said that if I was pregnant (at the time they discovered my ASD because we had been actively trying) they would see me through my pregnancy and I may have some fainting and more fatigue than what I may have experienced with my first two pregnancies (additionally with subsequent pregnancies, the holes may stretch and the added blood would add stress on your heart too). He then informed my husband and I that if we were not pregnant that once we get my ASD repaired we would want to wait at least six months before we getting pregnant. He also actually gave me the option to go through a pregnancy and have the ASD repaired after that or before a pregnancy. We went with the repair before an waiting the six months before trying again. That was November 2012 and by May 2013 we were pregnant with our #3!!

This is a little bit off of your question but I would love to contrast my experience here - We started out with the same midwife I had with our first two children who was AWESOME. With our third, I was somewhat nervous as I did not know what to expect this time around especially post ASD and ASD repair. Remember, I had NO knowledge of any health concerns prior to my pregnancies.

Around three months or so in this pregnancies, I started going into SVT roughly every 3 weeks and I would have to go to the ER to get adenosine. My beats would get up to 180-200 bpm. Now, this arrhythmia only happened AFTER my ASD repair and I never had this during any of my other pregnancies. I have been told one could get the SVT episodes when pregnant even when there are no holes in the heart. Additionally when I was pregnant with my first two my midwives did always say they could hear a murmur (and this was only during pregnancy) and that this can occur during pregnancy and its normal (now we know I had holes). Well we ended up moving from NYC to California when I was about five months pregnant and switched midwives. Not only was this new midwife freaked out about my ASD and ASD repair but also the SVT episodes although I was healthier now then I was before. We had had two non-hospital/non-medicalized births when I had holes in my heart just fine and now with my third and a repaired heart we ended up in a birthing center at a hospital (and I allowed the hospital to break my water - worst thing ever) with a room full of docs, nurses and the midwife turned doula. I had my oldest in 4 hours and my second in 1.5 hours (NO complications with holes) and our little guy - I cannot remember the length of the labor but the midwife was so nervous about my pregnancy and birth she somehow convinced my husband and I to get to the hospital before I was even in labor to make sure (since I have fast births) I was at a hospital if I went into labor. She even convinced me to take herbs to get my labor going so I could be admitted (worst and dumbest thing ever). I was so upset with myself that I got sucked into all the drama - I knew better. I had avoided all of this with my earlier pregnancies.

Her nervousness and concern actually made things very stressful and it negatively affected my birthing experience and my other children's experience. My son was born with a huge hematoma on his head that took 2+ weeks for his body to absorb because his head was pressed against my pelvis and there was no water/fluid (because they had broken my water). They also would not allow me to eat "in case of an emergency c-section" when I knew that the "contractions" were fake and were not really doing anything. I was disgusted with that midwife. This was all a week before my due date and I had carried both my other children full term. I later learned that there was a law passed in California 2 days after my sons birth that states a midwife does not have to have a doctor supervise their births... which meant she wanted to get me in the hospital and for my child to be born under not just her care but under the supervising doctor. She could have just said from the beginning that she was uncomfortable taking me on with an ASD/ASD repair. Over all for me, I do still prefer home births... even with knowing I have an ASD but more importantly being surrounded by folks who understand ASD/ASD repair and pregnancy. This may have been a midwife but she caused far more stress than anyone did for my family and I.

I say all of that to say, I had no complications with my births when I had holes and it was best that I was at home because having an epidural or anything else actually adds fluid to your body/heart and thats not good. Being at home with my first two births was actually a good thing. I remember feeling more tired after the birth with my second than my first but it was also early morning when I had them both. With my third before we moved to Cali, my original midwife had me go to an MFM for my first sono at 20 weeks. She recommended the best care one could have during a pregnancy is having a combo of a midwife and MFM. What I have learned is that people can get freaked out at the thought of a hole in ones heart and many get freaked out at the thought of a woman giving birth... put those two together and that can terrify someone.

Its important to have people around you - midwife and/or doctor who knows your particular case and health history. So you don't have over reacting people all around you. Yes, you want to be safe but

the midwife I had with my son here in California had me going to stress tests at the doctor's office and stress tests at my home when she would come over and she convinced my husband and I that my placenta could tear because the umbilical cord was not attached properly (not true - it was attached fine although to the side but not in a way where what she said could happen. The MFM nor my midwife in NYC were concerned but she really made me feel guilty and concerned. When I gave birth the placenta came out in one piece we even got our cord blood. It seemed like this midwife was trying anything to get my husband and I do have concern around this pregnancy but we were pretty cool.

I felt people treated me like I was sick. I did not have any meds with my first two before the ASD repair. I think in general interference (when unnecessary, and yes that can be subjective) in any pregnancy can cause a lot of stress for baby and mom - it can cause labor to stall even. I am obviously an advocate for natural child birth and I am unsure of your take on that but I am mostly sharing my experience to say that I did not have complications. That I had an easier time having my children WITH the holes in my heart than after the ASD was repaired. That sometimes knowing too much brings on more than its worth. When I had my son - the doc was actually trying to give me an epidural (which my cardiologist advised against given the added fluid) about three minutes before my son was born. I spent the majority of my time with this birth fighting against my water being broken (some of the not so nice nurses even threatened to kick me out of the hospital, no joke), fighting against getting pitocin and fighting against the epidural. The new midwife in Cali sat in the room in the hospital and said nothing. My husband and I would love to have another child and if we did I would opt for a home birth hands down... even with my ASD repair. I am curious -

Is this your first pregnancy/child?

How long have you known of your ASD?

I think if you choose to be in a hospital I am sure you would be fine, just remember to advocate for yourself - if your cardiologist has advised against meds (epidural and pitocin) make sure you communicate that. Some folks are fine with the extra fluid with this sort of heart condition - my cardiologists said no - so make sure you know your situation. Stay hydrated (and if you can, eat - this is also why I prefer home births as opposed being in the hospital but some hospitals are cool with you eating - you need the fuel). Also, many moms have given birth with holes in their hearts (many of us on here) and they had no idea. Don't allow anyone to scare the crap out of you about it. If you are cool and relaxed you will have less stress with your experience! Our bodies are amazing things and can do more than we even know. Best wishes!

Hi barbie86,
3 pregnancies and 3 vaginal deliveries before hole ever found. It seems women can go two ways with an ASD while pregnant. Some do very well with extra blood as possibly more oxygenated blood gets around and some do poorly as heart has a hard time handling the extra volume of blood. Have you made appt with congenital cardiologist who deals with this alone? Pregnancy and ASD? As responses show, everyone does differently. I didn’t even know and did ok, ( no meds) but that doesn’t mean you will. There are specialists out there for pregnancy and ASDs. Linda

Thanks for your answers. Yes, my first child. I dont know what type of asd I have, but there is a hole in my heart, it is also possible that it is pfo. I do not have problems with my heart, I only have 2 times per year migraines with aura. I am very angry because I investigated this hole by myself without having problems, so it would be much better if I did not know for this hole and have pregnancy without concerns. I have an app. with cardiologyst, who is specialized in adult heart defects, so we will see. I did not have tee, just tte (they saw it could be a possibility to have a hole), tcd with bubble study revealed a hole grade 2. I am very scared that they will put me on Heparin :((

hi barbie86,
dont worry about heparin while pregnant. they use it to prevent miscarriages in women with clotting disorders while pregnant to prevent another miscarriage. dont stress. all of this can add extra agrivation while pregnant. i had migraines with auras usually once a month and thats how i knew i was pregnant.( had constant migaines) one cardiologist said many years later it must be a PFO. it wasn’t. migraines seem to be more common with PFOs but like i said 3 pregnancies and 3 vaginal deliveries. i love all my kids. the pregnancy was the easy part. raising them is real work! if you end up on heparin they may use it preventively to prevent a stroke or thrombus. enjoy the pegmancy. sorry you had to pay but see a specialist as you plan. good luck. linda

Thanks. Linda I noticed you had a lot of health issues. Was that before or after births? You have also fybromialgia? How is your anticardiolipin=

Hi barbie66,
Yes, lots of health issues before repair but had symptoms of passing out often in childhood. Interesting now MDs think most symptoms that I was treated for before hole plugged were actually heart related. I don’t have fibromyalgia or so I’m told but because heart was getting worse as I got older I was given many diagnoses. First time murmur heard was after 3 rd child born ( maybe 3 years) and I was told mitral valve prolapse. Don’t remember what my anticardiolipin was. I will try to look at old test results. Interesting because we all have so many different symptoms. I have family members with clotting disorders who took heparin and other blood thinners after miscarriages to carry to term and have a 3 year old grand daughter and 4 year old cousin who are quite active and cute! I never took any meds as I said while pregnant. My actual ASD wasn’t found until my late 30’s for shortness of breath at my insistence ( by then I was told I had asthma which again now they question) but back than little was done as it was thought to be small and though I had symptoms, I passed EKG and stress test. At that time no right heart involvement. Doctors have learned a lot more since the 90’s. My children were born in the 70’s. My health history was horrendous but my heart just kept compensating I guess to keep going. Therefore I ended up with way too many diagnoses and thankfully one Doctor went " this is way too much" and ordered the right test that got me to the right heart doctor that immediately repaired me. Everything happened in less than one month. But remember, I was much older than you and went through my pregnancies fine. What you are doing is correct. Following up and keeping on top of the situation. Like I said, sad you had to pay for initial testing but you are on the right path. Remember the pregnancy will go fast whatever the consequences but the child will be your child forever and that’s when the real hard work starts! I love my children but I will always be the mother and concerned no matter what goes on in their lives! Linda

Don't be afraid.

I know it can be a terrifying thing (and I was afraid as well) but 20% of the population has an ASD. Many walk around much of their lives and do not even know it. I think the scariest part for me was realizing we had already had two kids and I had been dancing most of my life and I had always had an ASD and nothing (thank God) had happened. The good thing is, I had pretty much been taking care of myself - eating well, never smoked, never really drank except now the occasional glass of wine, danced so I have been athletic all my life.

So now that you do know whats going on and if you haven't always eaten healthy - now is a great time to start. And all I am suggesting is watch your salt intake, drink lots of water, a heart healthy diet is great and just pay attention to what you are putting in your body... and your stress levels. You may already be doing all of this and if so, dealing with this is something that can be dealt with and just keep taking care of yourself. I was mortified but my doctors would say things like - "this is fixable, at least this is not your brain because we could not fix that"... I know that may sound a little insensitive but when you think about the array of issues within the medical community that could be wrong with someone... this is one of those things that can be corrected. When I would come to my appointments I was not even considered sick ... I had a hire level of pulmonary pressure but as soon as I got the device my numbers when down from 39 to 15 within no time. I ended up having a cardiac ablation done (which I had to stay awake for!) and this was to remove the extra scar tissue that had developed around the device. This was all after I had my son who is 19 months now and 2.5 years after the ASD repair. This was only in March but it totally corrected the SVT and I have not had an episode since. And now we are definitely open to perhaps having baby #4 :). Remember our bodies are also amazing and will accommodate where it can and do things to manage things such as this. Which is why I went until the age of 31 without a clue. What is great is that there is this community and others where people are sharing their experiences and stories and we can ask questions. One of my first questions here was about my third pregnancy and working with a midwife. Although we had had two kids already and my heart was repaired and I was better I was even more afraid then when we had our older kids. I got a lot of great answers too and I have to say I am grateful for everyone on here.

Please don't be afraid because while this is the heart... there is so much research around this condition. I had my ASD repair done at NY Presbyterian (we were in NYC when we learned about it) and then had my cardiac ablation done at UCSF as we live in the SF Bar area now. Both were excellent hospitals. I had phenomenal care and there are Adult Congenital Heart Disease centers at both locations. To end up in two parts of the country (I am originally form northern Virginia about 15 min from Washington DC and I am sure there is great care there too) and have phenomenal care and get what I needed was pretty awesome and showed me how much attention and support is around this condition. Also, here is a great video I showed our daughters who were 4 and 6 at the time right before I went in for my procedure. I was actually more terrified then they were and this video even helped me a lot too :). ( Big hugs to you! Also, one of my favorite songs is now Titanium... I have a 35mm Titanium and polyester device (Amplatzer device which many on here probably have too) sealing my holes: ( ... Also, this is a performance I did AFTER my ASD repair, and after I had our third child - I am as good as new :)( I hope these are all inspirations for you :) and thank you for sharing your story!

I had 3 children and no one knew I had a huge hole in the heart. It wasn't until 4 years after my last child, that I started having symptoms. I had no problems with any of my pregnancies. Good luck!

Thanks to all. Had any of you migraines with aura? All of you had asd secundum?

Do you think asds run in families?

Hi barbie86,
Everyone is different but you are asking great questions. ASD can run in families and if insurance covers it and symptomatic getting checked never hurt. Not a bad idea if you have one to get your children checked out. I had 3 kids and one checked out fine. Still waiting for other 2 to get checked out. 2 grandchildren also checked and ok. We are at a little higher risk of passing this but no guarantee! So far in my family no one has one other then cousin and his closed in early childhood. No one knows what kind of hole he had and no one to ask. ASD ostium secundum is a hole in the center area of the atrial wall and the most common rarer congenital heart defect(CHD).
I myself had migraines with auras as did my mother and she does not have any heart defect. Often MDs says a Patent Foramen Ovale (PFO) can go with migraines but again not a guarantee. Since every patient presents with a variety of symptoms MDs must look at each case differently. As said for me, I carried 3 pregnancies to term and delivered vaginally with no heart problems at the time. I had migraines with aura before and that is how I suspected I was pregnant. I had what seemed like almost constant migraines for the first month of pregnancy then no more thru the rest of the pregnancy. So I thought hormone related! But I’m no doctor! Just happy to be pregnant and healthy at the time. Of course ASD was there but I didn’t know and I was ok. Good luck, Linda

I did not have any migraines. The only symptoms I had were heart palpitations and shortness of breath, but that was 4 years after pregnancy.