Wanting to become Pregnant

[mrsdrchpsych]

I suppose I should start off with a little history. I have HOCM, A-fib, and CHF. Although my CHF goes in stages from livable, to bad, to hospitalization bad. Anyhow, I just married 2 months ago And I want to become pregnant. Problem is, my husband missed the deadline for me to be placed on his insurance so we only have mine. So we have to wait until next year for that. The next problem is that all my medications are unsafe for the baby. Im on lasix, potassium, betapace, and verapamil. So I guess my question is how does an woman get pregnant with HOCM and heart failure? Ive talked to my doctors and all they say is well have to be careful but move on. I wasnt some real advice from someone who has done this. Thanks so much.

[Linda]

Re: Wanting to become Pregnant

Welcome, You've come to the right place to get the info you need. Please read thru the site and call the HCMA office. (973-983-7429)

On this message board - you will have many share experiences with you and offer support. Best wishes - Linda

[Cynaburst]

Re: Wanting to become Pregnant

I unfortunately can only offer some limited advice to you. I managed to have a successful pregnancy with HCM, but at the time, I was not on any medications and did not have problems with heart failure. However, what I did do, and this is what I suggest to you, is to carefully coordinate between my cardiologist and my OB. I also had a perinatologist (a doctor that specializes in high risk pregnancies) following my case.

Since I see you are near Chicago, I would also suggest that you get yourself to the nearest HCM specialist and have a serious consult about your prospective pregnancy. I know that there are some good doctors in Chicago. There is also the Mayo Clinic in Rochester, MN that is not too far away.

Call Lisa at the office. She can direct you to the appropriate specialist, and if there is anyone who knows whether a pregnancy has been managed with your symptoms, she would know it. She is a font of information on such issues. Your CHF and current medical regimen do definitely complicate the mix.

[eatwell]

Re: Wanting to become Pregnant

I can offer my limited experience as well. I had 2 pregnancies, both while in obstructed HCM (gradient at least 50). I took a beta blocker through both pregnancies (atenolol) yet no other medications. Obviously I was considered high risk and went to a specialty OB and followed closely by my cardiologist. I did not have CHF or any other medical issues and was in otherwise very good health. I will note that I was in my mid-30's which is considered high risk by itself.

I did well with both pregnancies (and did natural childbirth, more drugs aren't beneficial with HCM) and am blessed with healthy children.

Atenelol is considered a Class C or D, drug, can't remember. Meaning, it's generally considered unsafe or not enough testing to prove otherwise (which the latter seems more likely). Both my doctors felt it very wise to keep me on this through pregnancy and I had no issues with it. My greatest concern was whether I could breast feed. Being class C/D, the literature says it's unwise, could cross blood/brain barrier, etc. However, upon discussing with my OB, he felt it fine, greatest concern could be a lower heart rate in the baby. Considering the benefits of breast feeding, I decided to try it and glad I did. Neither baby had any issues and both breast fed for 17 months.

Of course, I can't answer how you might do, with additional medical issues and more meds, so the best advise has been given to you. Seek the correct professsionals to answer your questions.

Best of luck and congratulations on your marriage.
Laura

[dsymanow]

Re: Wanting to become Pregnant

My wife had HC and had three children. Here are some things we learned.

After we discovered my wife was pregnant with our first child, her cardiologist helped us locate an obstetrician who had experience with high risk pregnancies involving heart problems (we live near a major university hospital). Together, they developed a detailed plan for the pregnancy, including when and how various drugs were stopped and started. The plan included detailed instructions for care during the pregnancy, the delivery procedure (C-section), and post-natal care for my wife and the child. The plan was shared with the hospital, and we were given a hard copy in case we needed it.

If you have such a plan, it might be good to include a review and approval by the chief anesthesiologist at your hospital. Anesthesiologists play a key role in monitoring the heart status of HC mothers during delivery. Mothers without HC usually receive an epidural anesthetic. HC mothers don’t tolerate that type of drug very well, and instead are often given a general anesthetic in an operating room (or none at all). A problem that the anesthesiologists need to manage in an HC mother is that the general anesthetics that they normally use for HC patients can cause significant complications for the baby (i.e., the baby is born partially anesthetized). The best option is natural delivery (no anesthetic of any kind) but not all HC mothers can handle that. Because of the risks, anesthesiologists sometimes strongly object to being presented with an HC mother in labor and no prior opportunity to plan how to handle her specific case. Our plan wasn't "approved" by the anesthesiology department, and that caused problems for us (a planned C-section became instead a natural child birth).

The doctors often prefer to schedule the delivery of a baby with an HC mother in an operating room because its facilities give them the best range of options if there is a problem during the delivery.

Mothers who have HC and/or CHF (and diabetes) tend to have children who are larger than average at birth. Our cardiologist told us this was normal and not to worry about it. (Our third child was 10 lbs 7 oz.)

You might consider having the hospital conduct a detailed physical exam of the baby before you are discharged. Our cardiologist told us that babies from HC mothers tend to have the same birth defects (and rates) as babies from diabetic mothers. This is not a profound problem, just something to guard against for the sake of the baby. I don't know the complete set of potential medical conditions, but I do know that babies born to HC mothers (and diabetics) are at higher risk of congenital hip dysplasia (a condition where the baby's hip sockets don’t form completely in the womb, and the baby is born with dislocated hips). Our second daughter had bilateral CHD, and that is when we had this discussion with the cardiologist. CHD is correctable. It's a good idea to have the hospital do a thorough exam of the baby to rule-out the common problems that might occur. Your cardiologist and OB will know more about this.

I was present for all three births. At the third one, a nurse announced shortly after the birth "The baby's heart has a murmur." I learned later that this is a normal for a child who has just been born (something to do with the heart expanding after birth). That particular child is free of HC today (at age 16).

[Cynaburst]

Re: Wanting to become Pregnant

I am going to have to disagree with what the last poster said about larger babies being born to moms with HCM. In fact, if anything, probably the opposite is true -- largely because many HCM moms are on beta blockers.

Beta blockers can cause IUGR, or interuterine growth retardation. This essentially means that the baby grows less than is average in the uterus, and sometimes these babies are delivered earlier as these babies tend to catch up with their peers when they are out of the womb and in the world eating real food.

While I have known and read of many moms who went through their whole pregnancy on beta blockers, I have not personally known of any moms who were on anti-arrythmics or diuretics. I have also not read about calcium channel blockers and pregnancy. I did, however, while pregnant, study up alot on beta blockers and pregnancy, and I know that those, if appropriate monitoring is done, can be safely used during pregnancy, and if there is an issue, it tends to be slow heart rate and IUGR, both of which resolve when the baby is born.

[eatwell]

Re: Wanting to become Pregnant

I agree with Cynthia. Since I was on a beta blocker for both pregnancies, I too was told (which I forgot to mention previously) that my babies may be smaller than average because of the beta blocker, just as Cynthia mentioned. My two babies weighed: 6# 8oz and 6# 15 oz. These of course are not necessarily too small, but below average. I will note I carried them to term, actually my son was 3 days past due. Again, they had no issues at birth (and neither did I), or thankfully since.

Also, in regards to C-sections, this also is NOT automatic in HCM. Actually, I was told a drug free natural, vaginal birth is the ideal for an HCM patient. Your fluid volume is increased during pregnancy, which is a positive with HCM (less chance of dehydration, less strain, aids gradient, etc) and even though childbirth is considering a physical stress or strain, your fluid volume is still up and natural birth is often well tolerated. This of course is barring other issues that could occur especially with other medical issues.

Like I said, I went natural and I would do again for a lot of reasons. It's a 'high' like no other!

Just my 2 cents, Laura

[craqbin]

Re: Wanting to become Pregnant

I feel your pain. I made my wife not take any medications even tylenol. I also made her have a natural birth without an epideral or an IV. My son is now two years old 35 lbs and in the 95+ percentile in height. It may be higher but the online stuff only goes to 95+. Well I can only hope you find a way to have a safe pregnancy and hopefully you can sit at home and not do anything for 9 months. But most importantly prenatal vitamins and eat like a pig heheheh.

Oh and I opted out of vaccinations and circumcision but those are personal choices. I hope these genetic defects don't come from our environment or chemicals. She didn't eat pork either.

[Reenie]

Re: Wanting to become Pregnant

How did you make your wife not take any meds? And why? I took several meds while pregnant, including some heart meds. I do not have HCM but had other cardiac issues. They are all fine and they even have all tested at above average and gifted in many areas. There is no reason not to have any meds during pregnancy if you need them. If you do not need them, more power to the ladies.

Reenie

[mrsdrchpsych]

Re: Wanting to become Pregnant

Thanks to everyone who has responded. We are only in the beginning phases of learning about pregnancy. I would say that within 2 years we will begin trying-if it is safe. I think that being in heart failure for me, complicates things to a degree. I just know that becoming a wife has made me more aware of my disease. Thanks again for all the suggestions. It has helped.

[craqbin]

Re: Wanting to become Pregnant

How did you make your wife not take any meds? And why? I took several meds while pregnant, including some heart meds. I do not have HCM but had other cardiac issues. They are all fine and they even have all tested at above average and gifted in many areas. There is no reason not to have any meds during pregnancy if you need them. If you do not need them, more power to the ladies.

Reenie

Yeah she was healthy. She didn't need any. But sometimes she had headaches and morning sickness. She didn't have any medication for that.

[THW]

Re: Wanting to become Pregnant

Congratulations on your marriage. I will share my experience as well. I have to agree with Cynthia and Laura; I was told, and all the research I did before and during my pregnancy said that HCM patients' babies tend to be a little smaller on average, due to the IUGR caused by the beta-blockers that many HCM patients are on during their pregnancies. I have HCM and had one full term pregnancy more than 5 years ago (also weighed 6 1/2 lbs at birth). I was followed very closely by my cardiologist and his team, as well as by my high-risk OB, who conferred with one another regularly -- and half way through my pregnancy, weekly.

When I became pregnant, I had been diagnosed but was not really symptomatic, and I was taking no medication for my HCM (Livin the life, eh!?! ). I began on a beta blocker after my first trimester was over (-- atenolol, yes, Laura, as I remember, a class C.) I did experience some complications half way through my pregnancy; my at-rest gradient went from being in the teens when I became pregnant, to around 50 and then to 100 and then to over 125 by the end of my pregnancy. Unfortunately, my gradient did not ever go down, well, not until my myectomy earlier this year. So, pregnancy definetely was a big strain on my heart. When I was about 20 weeks along, I got a seemingly minor case of the stomach flu which landed me in the hospital for a couple days due to dehydration, then into ICU as I went into CHF/pulmonary edema when they re-hydrated me with my less than efficient heart, and then back into a regular room for a couple more days, then on bedrest at home. From then on through the rest of my pregnancy, I had a new found respect for this disease and took seriously the warnings I was given by the docs.

My husband and I sought second opinions from cardiologists and high risk OBs on how to proceed with the delivery. Everyone was in agreement that I would not have a c-section unless an emergency occured (due to the increased risk of blood loss with any c-section, as well as the increased anesthetic -- both not good for a HCM patient if it can be avoided), and everyone thought it was reasonable to think that the pain and strain of pushing, without ANY pain meds could be exhaustive to my heart, so they and we agreed on a "light" epidural, with careful monitoring of my blood pressure. When all was said and done, my blood pressure DID end up beginning to bottom out, but they were monitoring, and were prepared, and got it under control quickly.

They were also prepared in the delivery room in that EVERYone was in there, with a job to do. The cardiology team, doing what they needed to do, the high risk OB team, the anesthesiologist, the neonatologist to check our son and the effects of the drugs on him; he was fine.... They intentionally allowed me to "labor down" as long as possible. They used a vacuum, and manually pushed on my abdomen to help, and I pushed a few times. He was fine and our delivery was relatively uneventful. I was grateful to be in good hands and to have all the folks there that needed to be there, as it could have turned out differently. (And now that I began seeing a true HCM specialist in Cleveland almost a year ago, I sometimes think, "Wow, and I thought I was in good hands then. Wonder what Dr. Lever would have had to say when I was pregnant.")

A couple years later, I was more symptomatic (shortness of breath, near syncope, and palpitations, but not in CHF!), and we were wanting to add to our family. After an evaluation, all of my specialists (cardiologists and high risk OBs) not only said "No," but they wanted to delve into our birth control methods to make SURE that I was not going to become pregnant. They felt it was very unsafe for me to have a second pregnancy for both me and the child. Emotionally, it was still very difficult to accept, even though I knew to thank my Creator for allowing me to have experienced it at least once.

However, then we went through the adoption process and adopted a set of twins; we were there when they were born, and they were put into our care when they were about an hour old. And April, I can tell you that adoption is every bit as much of an emotional rollercoaster and miraculous event as being pregnant and giving birth. It truly has changed our lives and has enlarged our emotional hearts in a way that can't really be described, much like being pregnant and giving birth can't be adequately described with words.

This is hard to say to anyone, but I THINK, and there is no way for me to know how I would feel in your situation, but I THINK that if I had a-fib and were in heart failure, and knowing now, what I know about pregnancy, my heart, and adoption, I would choose the adoption route to parenting. If you DO choose to become pregnant, I would strongly urge you to first be evaluated by a TRUE HCM specialist (Cleveland or Mayo, perhaps), and first find a well-educated High Risk OB that is up to date on HCM and willing and able to consult with the HCM specialist.

God bless you as you proceed on this journey to parenthood, and feel free to pm me if you'd like to talk further.
Theresa

[Cynaburst]

Re: Wanting to become Pregnant

I just wanted to thank Theresa for that great post. I have to say that I agree with her, and experienced alot of the same things that she did during her pregnancy.

I started my pregnancy with no gradient, and for the first time in pregnancy, developed one of approximately 25 mmHG which never went away, but continued to grow even after the pregnancy. This also wound up resulting in my myectomy 8 weeks ago. When I became pregnant, I wasn't on any meds either throughout the pregnancy, but started atenolol a couple of months after delivery. I had an epidural during my delivery, and while I was ok during the delivery, my BP tanked afterward and went down to 50/30. I fainted twice and then was made to lie in bed for 24 hrs. hooked to IV fluids.

Who knows whether this would have happened anyway, but I know that I felt ok before pregnancy, and really worsened after. I developed ventricular arrythmias also after my pregnancy and needed an ICD. I never had heart failure symptoms (and to this day don't really) but I am sure if I asked (which I have never had the nerve to do since I am not planning another pregnancy) the answer would be an unqualified NO.

Adoption is a great alternative, and if I wanted other kids (which I don't -- my hands are quite full with my one 5 year old) I would definitely consider this option.

Best of luck to you. And do please take Theresa's advice - consult with a REAL specialty center a la Mayo or Cleveland before you do anything like consider a pregnancy. You have a very complex situation and don't want to do anything you will regret later. A child is something that will change your life forever, even without taking your heart disease into consideration.

[Lisa Salberg]

Re: Wanting to become Pregnant

Theresa and Cynthia - nicely said! Thanks for those informative posts.

Let me add in a few things. While most women with HCM will do well with pregnancy there are some that do not do as well and those with a/fib had additional risks. The women who have posted with HCM I do not think had a/fib prior to pregnancy. I would strongly suggest that you go to an HCM speciality center and talk to a doctor who really knows the ins and outs of HCM prior to getting pregnant. I would also look into adoptions as an option if they doctors feel the risk is just to big for you. I am not saying do not have a baby - I am just saying please be very careful we want you and baby to be healthy!

Best wishes,
Lisa

PS - The comment above about not letting your wife take medications during pregnancy is not really helpful advise for women. Most women with HCM stay on medications during pregnancy with no problem at all. The questions regarding medication durning pregnacy is one for the mother and the doctor to make, it could be the difference between mom having quality of life during and after pregnacy and if mom is at risk so is the baby. - just some food for thought.

[eatwell]

Re: Wanting to become Pregnant

I will say, that no I did not have A fib before pregnancy and have never had since. As you can see, life with HCM has many variables and adding pregnancy is a major element in of itself without adding HCM, or other more or equally difficult medical issues.

I am one of the lucky ones. Two pregnancies with moderate gradient that didn't really change, no complications, etc yet I, too felt that 2 was enough and didn't want to 'push' my blessings.

Keep up your research.
Laura