Valve replacement and child bearing

[Nell]

Hello! I?m Nell?short for Lynelle. I?m new to this forum and I am grateful it exists, since I will have to have a valve replacement very soon. While I know the decision for what valve I am going to use is mine based on Dr. councel, I?m in need of advise, education, and experience of those of you who have already been through valve replacement surgery.

To make a long story short, I was born with a heart murmur and was told it would not affect my life in anyway. Well that was the wrong advise, and luckily I have a new GP who wanted to know exactly what was causing my murmur. I had an echo-cardiogram on March 28th which showed an aortic bicuspid valve (that I was born with) which has calcified. My aortic stenosis is classified as very severe. The cardiologist already knows I?ll have to have a valve replacement, just based on the echo. My cardiologist warned that I am not to run, exercise, or exert any physical exertion. The good news is that my heart itself is very healthy. It?s just the valve that?s damaged. I am having an angiogram on April 25th for more testing. I will also be getting
a second opinion as well.

I am 34 years old and have a wonderful 22 month old son. Just before finding out about my aortic stenosis, my husband and I were wanting to get pregnant again. My cardiologist said that if I want to birth more children I need to choose the cow/pig valve. Thus no anti-coagulants after surgery. However, he told me about the fact that cow/pig valves only last about 10 years and I would have to have another open heart surgery and replace the valve with a mechanical valve. He also warned me that with each surgery, more risk incurs.

If I choose the mechanical valve I will be on anti-coagulants, and therefore will not be able to birth more children. The Dr. mentioned that mechanical valves last 30, plus years, if not the rest of my life. Thus, only having one open heart surgery.

I have done quite a bit of research online, along with reading Adam Pick?s book. I know I need to more. Even if I choose the mechanical valve, I need to do more research on which one.

The more I learn, it seems more difficult to choose. Each day I a vacillate over which valve to choose. Today, I?m leaning more towards the cow/pig valve so I can birth one or two more children, then have a mechanical valve when it wears out. I would be about 44. I still think that 44 is young to be having open heart surgery, verses 64 if the mechanical valve only lasts 30 years and needing a replacement then.

Here are the questions I have for all of you.

Has anyone else been in my situation and had to decide whether or not to birth more children based on the valve you chose? How did you come to your conclusion? Are you happy with your decision?

Has anyone had open heart surgery/valve replacement twice? How old were you with each surgery? How were each recoveries?

Does anyone know of mechanical valve replacement where women have been able to successfully birth children following?

Thank you so much for your help!

Nell

 

[Debbie]

nell

nell

Dear Nell welcome to the forum, you will find alot of good information here go through and read all you can you'll learn alot. I just recieved a bovine pericardial tissue valve and my doc.s tell me it will last 20 years in the aortic position in a 65yr. old. The younger you are is does'nt last as long. Just to let you know the future holds promising new advances for tissue valves. The transcather heart valve in a few years will be able to replace the tissue valve via the femoral artery so no need for another full on OHS. This approach is in clinical trials right now and should be FDA approved in 2-3 years. My surgeon said with 100% confindance that he would be replacing valves this way in 5 years! It's something for all to think about that are thinking of mechanical just to avoid another OHS. Please do you own research on this and learn as much as you can, again welcome to the forum. Debbie

 

[Karlynn]

Welcome Nell,
You have a tough choice. I had 2 children prior to my replacement and I went mechanical. But I was very sick prior to my replacement and didn't want to put my family through all that again if I didn't have to. We had planned on having 3 children, but we were satisfied with having just the 2 and me being healthy. I think if we just had one, it would have been harder to accept.

Women with mechanical valves have had successful pregnancies. But it is a very difficult process and some women have stories that are not as successful. Personally, it is not one that I would recommend. It's my opinion that if any young woman comes here prior to having children and wishes to have them, that she go with a tissue valve. This is, of course, assuming that her heart would be healthy enough to go through a pregnancy. We do have a member, and I can't recall her name at the moment, who's tissue valve did need to be replaced shortly after she had a baby. So how a tissue valve would work for a pregnancy is another unknown for you.

I would caution setting your hopes on tissue valves, in otherwise healthy patients, being replaced via catheter in 5 years. They have just begun trials on people who would not survive open heart surgery and many doctors in the field believe that until time has passed and they learn just how well these catheter-placed valves hold up, open heart replacement will still be the best way to replace valves in those who's lives are not at risk. There is no history yet to know if these catheter replaced valves will have the durability that open heart replaced valves have. So my personal opinion, after reading a lot of information on the subject, is to not expect catheter replacement to be the norm for at least 15 years, if at all. It's a great advancement right now for people who would not survive a regular replacement, but there are no trials being done now, that I know of, on healthy patients.

For me, the decision would be based on whether I knew I absolutely had to have another biological child. If I did, I would go tissue and hope that the valve lasted a long time after the baby was born. If I wasn't convinced that having a 2nd child the "biological way" was my only desired option, I'd go mechanical. Living with Coumadin is not much of an issue for most of us. And there are lots of us that lead very active lives.

I wish you the very best as you make your decision.

 

[Bina]

Hello Nell, and welcome!
I had OHS at age 45 and I have one grown daughter. I knew in my thirties that my heart would not be up to having another child and I really did not want to take the risk of having a youngster running around and not being able to look after things.
I chose mechanical to greatly lower my chances of a second surgery and I am so glad about that; it has taken me 2 yrs to recover from the first one.

 

[PairoDocs]

Need For More Info

Need For More Info

Hello! I?m Nell?short for Lynelle. I?m new to this forum and I am grateful it exists, since I will have to have a valve replacement very soon. While I know the decision for what valve I am going to use is mine based on Dr. councel, I?m in need of advise, education, and experience of those of you who have already been through valve replacement surgery.



Nell

Dear Nell,
While it is not recommended, you can be managed on heparin or Lovenox during a pregnancy with a mechanical valve. We have done this for several patients who accidentally got pregnant after valve replacement (mostly aortic valves). There is an increasing amount of information available, since more and more women survive to childbearing years because they have had valve replacement. In fact, it's not usually the valve that causes the problem; it's the comorbid conditions such as aortic aneurysms or weakness or other connective tissue problems or coronary artery disease that cause more problems than the valve. I have sent many a patient to the cardiologist for a stress echo/treadmill during pregnancy and for angio before pregnancy to see if she was up to the rigors of childbearing. We have had several needing to be on bedrest the whole time and had to have C-sections early due to complications with their valves.

This means that you have to be ready for things like markedly preterm delivery by c-section, with all that means as far as problems with the baby, including cerebral palsy, learning disabilities, vision problems, etc., not to mention any effects on your health. Lovenox means a shot, so if you don't like needles...Bedrest is harder than you think. Cardiac physiology changes markedly during a pregnancy, and a mechanical valve cannot change in size along with the increasing size of the heart. You may end up with permanent disability if you have complications (although any pregnancy carries that risk.)

My advice is to see a perinatologist or someone at a major university medical school where there is a reproductive medicine department before you make that decision, and do it in conjunction with your cardiologist. We have to send people to University of Utah or in less severe cases to Boise out here, but Brigham and Women's has a good rep out East. I admit I can't remember the names of all the bigwigs outside of SLC but there is quite a bit of info on the Internet. You won't be able to make any sort of final decision until you have all the info. There is also the possibility of surrogacy and many other options these days as well. Many people also have non-cardiac related health issues these days, and we are seeing very new things (metabolic syndrome and concurrent coronary artery disease in 20-year-olds, for example) in cardiology in the women of reproductive age. Many women also wait longer for pregnancy, thus increasing the risk of all sorts of stuff.

My husband is the one with the OHS, but I have done obstetrics for years, and it is a very dynamic field. Hopefully this is helpful.

Spring is Here in Idaho,
-Laura

 

[hensylee]

the wife of a member has had two but don't know which valve she had. You might look at Christian's posts (search: Christian). He kept us up with her pregnancy throughout and it went well. Then they had a second child. Wishing you well in this very personal decision.

 

[WayneGM]

I can't offer any insight on your question about valve choice if having children, but I wanted to welcome you to our VR community. Glad you found us.

 

[MikeHeim]

I don't want to sound negative, but here are a couple posts from those who have had issues with Coumadin and pregnancy:

http://www.valvereplacement.com/forums/showthread.php?t=16186
http://www.valvereplacement.com/forums/showthread.php?t=23203
http://www.valvereplacement.com/forums/showthread.php?t=23884

Others have not had nearly as many issues as those from the threads above, but it is imperative to understand that undertaking a pregnancy while on Coumadin is VERY serious and must be very closely monitored by a specialist to minimize the risk of complications.

Best wishes.

 

[kerri73]

Hi Nell!

I'm actually going to see a perinatologist next week about pregnancy (I've seen him before, but it was at the end of 2005, so I want to meet again with him before I do with my cardiologist this Summer).

I have an artificial mitral valve (which is supposed to be a little more risky because of the placement of the valve and clots forming). However, both he and my cardiologist (who is specializes in congenital defects, etc) say that the best course of treatment is to stay on coumadin, as long as your dose is around 5mg/day. It does seem like everyone I hear about who has serious complications has switched to heparin or lovenox. I would probably only consider those options during the very beginning while the baby is doing most of its forming, as well as at the very end before delivery.

We'll see what I learn as I go through these next couple of appointments and I'd be happy to share!

Good luck to you in your decisions!
Kerri

 

[Mimi]

Hi Nell,

Welcome to the forum.

Anyway, I'm 34 years old with a 8 month old baby. Unfortunately, during labour my valve blew out and I required surgery.

At the time, I was in the difficult position of making a decision about which type of valve I should replace the damage valve. However, at pre-admission whilst talking to a doctor I noticed a letter written by the surgeon who stated that I would be having a mechanical valve. I asked for an interview to discuss the matter because I believed at the time I had an option. He explained that my heart was too damage to cope with a nine month pregnancy again and that I was fortunate enough to last the first pregnancy.

It's difficult to come to terms with the outcome, but ultimately I believe the surgeon made the best decision possible. But each case is different and you should listen to the advice given by your medical team regarding your situation.

Regards,

Mimi

 

[ALCapshaw2]

Welcome Nell,

Since you have been diagnosed with a Bicuspid Aortic Valve, I recommend that you read the thread entitled "aneurysm" in the Heart Talk Forum and it's sequel by the same writer (caterb85).

Bottom Line: Connective Tissue Disorders have a high correlation with BAV and can result in aneurisms in the Aorta and even an elevated risk of Brain Aneurism. You would be wise to choose a surgeon who specializes in surgery of the aorta or at least has considerable experience with surgery of the aorta and Connective Tissue Disorders / BAV.

Regarding your Tissue vs. Mechanical decision, IMHO, going with a Tissue Valve to have your babies is certainly the least risky approach and would most likely be best for the babies.

I like to advise everyone to also have a Plan B "just in case" there is a reason that your first choice is not viable or not a good idea once the surgeon 'gets in there'. FWIW, I asked for a Bovine Pericardial Tissue Valve but received a Mechanical Valve (surgeon's choice) after he assessed my 'extenuating circumstances' (due to Radiation Damage).

When it comes to Mechanical Valves, I am highly impressed with the technological advancements offered by the relatively new (1996) On-X Valves. See www.onxvalves.com and www.heartvalvechoice.com for more information. You may want to discuss pregnancy issues with their Manager of Education, Catheran Burnett, RN, at 888-339-8000 ext. 265 or e-mail to [email protected]

Happy Reading!

'AL Capshaw'

 

[Lynlw]

Hi there have been a few people here that have had pregenacnies with Mech valves, please search for Willow and Anthony,she has had 2 babies with mech valves EVEN with the leading experts, it can be very dangerous to the Baby and Mom, of course some people have an easier time. I saw someone mention staying on coum the whole time, a while ago Al posted a link about the different birth defects coum can cause babies. Of course again everyone is different but with all related to heart surgery and choices, you never know what group you will fall in.
As for repeat surgeries Most reports I have seen the risks for a second surgery are not that much different than a first. NOT that I am recomending it by any means, but my son who just turned 20 Sat, has had 5 open heart surgeries, he actually had the best times recovery wise at numbers 3 and 4. He's had the usually bumps in the road after most of them (some small some big) but is doing well. When he had his surgery last spring we actually talked about him getting on the trials in Boston for the Cath based valve replacement, but he ended up keeping his bovine valve and having his conduit replaced. Many of the kids with Congenital Heart defects have 2 or more surgeries before they reach kindergarden, so the good thing about that is many more surgeons are getting experience with people having multiple redos and the issues that can come up.
Good luck with your decision. Lyn

 

[Lynlw]

the wife of a member has had two but don't know which valve she had. You might look at Christian's posts (search: Christian). He kept us up with her pregnancy throughout and it went well. Then they had a second child. Wishing you well in this very personal decision.

Ann, Christian's wife Jill had a repair. Lyn

 

[Karlynn]

I think she had one baby before the repair and one after.

 

[pamela]

Hi Nell,
I am a survivor of 2 OHS as you can read in my signature. Knowing what I know now, I think that if I'd been diagnosed bicuspid before my daughter was born in 1994, I would have seriously considered either adoption or being content with my one healthy child. As it was, I spent a lot of time in denial and blissfully unaware (ignorant) of the damage a pregnancy could have done to my heart. Fortunately, no harm, no foul.

I'm not sure the subcutaneous valve replacements will be a viable alternative for those of us who suffer stenosis and pannus tissue ingrowths. From what I gather this surgery is best for people with prolapsed valves and of an advanced age with no desire to be physically active and/or parenting an energetic toddler.

Your other consideration may be the harsh reality that you have a congenital heart defect and your children stand an elevated chance of inheriting your condition. There are many other inheritable connective tissue disorders that are unrelated to the heart, such as scoliosis, colitis, eczema and kidney diseases that perhaps bear thinking on, if only to dismiss them as a concern.

With advances in health care (heart disease treatment and surgical techniques) you and your children stand a positive chance of coming through pregnancy and delivery without insurrmountable difficulties.

Take heart.

 

[Lynlw]

I'm not sure the subcutaneous valve replacements will be a viable alternative for those of us who suffer stenosis and pannus tissue ingrowths. From what I gather this surgery is best for people with prolapsed valves and of an advanced age with no desire to be physically active and/or parenting an energetic toddler

That is not necessarily true, the trials being done in Boston Childrens are being done on children and young adults that will have very active lives.

 

[6 for Sarah]

I had a human allograft aortic valve put in back in 2004. I have since had 2 successful," low risk", pregnancies and 2 healthy children. I take a low dose aspirin daily and that is all. I continued to take it throughout the pregnancies with no problems. I decided to go with the human valve becuase I knew our family was not completed and that was best for any future pregnancies.

I have decided that when this one needs replacing that I will go mechanical at that time. I am not sorry in any way for going tissue the first time even though I dread another OHS. I am now resesarching the minimally invasive procedures and hope that by the time I need it replaced it will be more readily available for redo's. The tissue valve got me through my pregnancies and allowed me to have my 2 littlest precious babies! I cannot even imagine my life without them.

 

[pamela]

I'm not sure the subcutaneous valve replacements will be a viable alternative for those of us who suffer stenosis and pannus tissue ingrowths. From what I gather this surgery is best for people with prolapsed valves and of an advanced age with no desire to be physically active and/or parenting an energetic toddler

That is not necessarily true, the trials being done in Boston Childrens are being done on children and young adults that will have very active lives. (internal quotes added by pamela)

I just related my view on the information I've gathered, by no means should anyone read what is posted on an internet forum as the definitive source for complete knowledge, nor should it be used as the sole basis for making important decisions.

You focused on the age of the participants, do you have added data on whether the study handles stenosed and scarred valves? I would be interested to know if that's a hurdle being addressed.

Take heart.

 

[3rdtimesacharm]

re:childbirth after mechanical valve

re:childbirth after mechanical valve

I hope I'm not too late getting my response to you, but I think I might have some valuable info for you. I was born with your exact same "defect", however it was discovered and followed from birth. I had a Ross procedure done in 1994 (I was 15). 2 YEARS LATER one of the tissues valves had already failed and I had a mechanical (St. Jude) valve put in ( I was 18). Like you, we knew going into the tissue valve procedure we were mearly buying time to avoid Coumadin, but we didn't expect it to last only 2 years (this sometimes happens).

I now have a St. Judes valve and have had: not 1, not 2, but 3 children since my St. Jude valve was put in. Granted this was against standard practices that my cardiologist had recommended, but it is possible to have children while on anticoagualtion therapy! The catch: I had to go on Lovenox, which means giving yourself shots 2 and sometimes 3 times a day in your stomach. AND I lucked out in that I had an absolutely AMAZING perinatoligist (spelling???) that knew exactly how to monitor my anticoagulation. During my 3rd pregnacy we were stationed up in WA, and the Doctors there actually wanted to keep me on the coumadin (standard practice in Europe...) I did not feel comfartable with this and neither did the anti-coag Doctor there so i moved back to Oregon to be seen by my specialist there. The trick is to find a Dr. that will monitor your levels properly!!!!! (peak level AND trough level so you are not non-therapeutic!!!!))

This whole ordeal was not a walk in the park by any means, and of course there are serious risks, but with the proper care and monitoring you CAN safely have chidren while on anitcoagulants! I never had a miscarriage and my children are all very healthy- no problems what-so-ever! We had fetal echos on all and had ultrasounds once a month or so to monitor their development. My pregnacies were without complications and my births were wonderful! You have to schedule the birth early to get on a heparin drip IV, so that took some of the "fun" out of it, but I didn't mind at all!!!!

If I knew that back when I had my first surgery I would have had a mechanical valve put in and avoided the soon to be 2 ADDITIONAL surgeries!!!!

 

[Karlynn]

Welcome and thanks for posting. I think your insights are very helpful to those facing these decisions.