2nd Pregnancy w/St. Jude Mechanical Valve

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A

Anthony

Hi everyone,
My names Anthony. My wife and I have one child. My wife had him with a St. Jude mechanical valve. First I want to say that having a baby with a mechanical valve is not recommended and there is great risk as you will see reading our experience with it. (That being said adoption is a great alternative.) However, we have done it and we understand the risks. I hope that you will consider our story and not approach this posting with negativity. It is crucial that we have positive, supportive people surrounding us during this time. That doesn't mean I don't want to here your experiences, suggestions, even if they don't have a good ending. I just mean that we are not considering an abortion so it's not necessary to bring it up. There is enough difficulty and discouragement in trying to be pregnant with a mechanical valve.

If my wife wasn't brave enough to try I would not have the beautiful son that I have. And that is priceless. I hope that some of you will respond to this and share your knowlege and feelings. Hopefully your comments will help us and others. Especially if you have tried any of the approaches I've listed below. We would love to here from you.

At the age of 16 my wife Willow had her first mitral valve repair surgery due to Rheumatic Fever. (No, I didn't know her then.) The repair didn't hold. Six months later she had her first St. Jude Mechanical valve. At 22 she married me (I'm so lucky). She explained that she had a mechanical valve. But she said she could still get pregnant and have kids. I was naive and didn't question her, as a matter of fact I really had no idea what was in store for our family.

We had a very good High Risk OB. He transitioned her on to Lovenox. He checked her blood regularly throughout the pregnancy and everything seemed fine. Toward the middle of her pregnancy I noticed that half of her face was going numb for about thirty seconds at a time. We met with a few doctors, all of them said that it couldn't be a TIA (mini-stroke) because it didn't last long enough. Well despite my gut instincts I trusted their opinions. At 28 weeks in September of 1999, my wife woke me up. She said that she was in major pain. I took her to the emergency room. She had gone into premature labor and they couldn't stop it. My son was born at 1 lb 11 ounces. So after only a year and a half of marriage I had a baby in NICU and a wife in ICU. During this time the doctors said that my son may or may not make it, but that it appeared he had no birth defects. However, they said that only time would tell.

A few days after, while my wife was recovering, a nurse came up to me and asked me if I had noticed numbing in Willow's face. I told her yes. She asked me how long it lasted. We walked into the hospital room and Willow's face was numb again. It lasted under a minute. I told her that this had been going on for some time but the doctors said that it was too short to be anything major. The nurse talked to the doctor and they did an echo. Guess what?! They found a clot on the valve and a few days later my wife had her third heart surgery with a replacement St. Jude Mechanical valve. The doctors mentioned the idea of a pig valve, if we wanted more kids, but my wife and mother-in-law had already made up their minds.

I am very fortunate. My wife made it through surgery again. My son also amazed everyone. He is now six years old and is perfectly healthy. At the hospital my mother-in-law told me to get clipped that way Willow wouldn't get pregnant again. My family over heard this and said that Willow should get her tubes tide. They said nothing was wrong with me and if Willow ever died I would be able to have more kids. This all happened within an hour after my wife having heart surgery. (I realize in some instances men being clipped is reversable but not for me.) When I was twelve I had an operation that 95% of the patients who have can never have children. So the idea of getting clipped after surviving a miracle operation is very difficult for me. My wife and I talked about it and decided to just use protection and be careful. We feel that a decision to get "clipped" is ours to make not either of our families. Since then my wife has still wanted to get pregnant. I am not naive anymore. The risks involved in pregnancy are great. We have done research on this. There is no perfect answer. There are three approaches to pregnancy with a mechanical valve that I'm aware of:

1) Stay on coumadin the entire time.

This is the favored approach by the Heart Association. Many studies show that woman usually don't get clots on coumadin. However there is a high risk of having a miscarriage, 60+ percent. Plus the baby is completely at danger of many birth defects as you already know. But it is the safest for the mother.

2) Take Lovenox the entire pregnancy.

This is what we did with our first son. This is the safest approach for the baby. But the problem is most women that do this end up with a clot on their valve by the end of the pregnacy. Some die during pregnancy because of this. That of course makes it unsafe for the baby as well. If mom doesn't make it, the baby doesn't make it. (My wife had her lovenox levels checked all the time. Everything looked good. If someone tries this approach make sure you have regular blood tests, and "echos" during the pregancy. Please learn from our experience.) I cannot argue with the benefit of not hurting the child. My son has NO birth defects. He is perfectly healthy.

3) Take Lovenox the first trimester, 6-12 weeks, of pregnancy. Then go on coumadin until about 34 weeks. Then change to heprin/lovenox a week before surgery. Have the baby delivered by c-section the 35th or 36th week of pregancy. This is the approach we plan to take. We realize that the baby is still at risk. That being said, I've been told that the majority of the baby is developed by the end of the first trimester. This approach seems to make sense for our situation. Especially with my wife's previous history of clotting on Lovenox.

My wife is eight weeks pregant. She was put on Lovenox in the fifth week of pregnancy.

We have also added some more things to the list. We have five doctors watching my wife. We have the delivering OB, High Risk OB, Hematologist, Cardiologist, and her Primary (Just in case we need a referal no one else will give, do to HMO's). Oh and we have a clinic we go to. That way we can check her levels. If the Lovenox dose is off at all she gets drawn every day and redosed until it's right.

Once we get through this pregnancy we plan to have Willow's tube's tide. If she miscarries I have decided to get clipped. But it's our decision not our families. Infact we haven't discussed this with them and we don't plan to.

We have added one more thing to the equation. PRAYER. I can't think of something more important than prayer. Anyway I pray that all goes well. Your comments are appreciated.

Sincerely,
Anthony
 
Dear Anthony,

I can't really be of any help as I have had no experience with pregnancy with a mechanical valve. I just wanted to write and wish you all the best with whatever decisions you take and paths that you follow. May God be with you all the way. Jeanne :)
 
Wow, that's quite a story. You all have been through a lot. I am here because my 5 yr-old (& 3 yr-old) sons have BAV & associated problems, I have no personal experience myself. However, I do wish you and your wife they very best of luck with the pregnancy and I hope everything turns out well for you. I was glad to read that your preemie son pulled through with no problems. Good Luck!
 
I won't offer any advice, because your decisions have been made.
I will offer my best wishes, and my hope that your wife and your unborn baby do well through this pregnancy.
God Bless and Godspeed
Mary
 
Earlier this year when I found out I needed a valve replacement, I did a bit of research on pregnancy and mechanicle valves. As you know most people strongly discourage it but I have read a few research articles where people were much more optomistic. That being said, I opted for the tissue valve to allow me to continue to have children and to avoid the situation you now find yourself. I am sure the next seven months are going to be very tense ones for you. I believe in the power of prayer too and wish you and your wife the very best. Please keep us posted as to how things progress.

--Janea
 
Anthony, welcome! Thank you for giving such a detailed explanation. It seems as if you are saying that baby #2 was not planned, but I guess whether it was or whether it wasn't doesn't seem to matter now.

I hope that you find a community here that will be of good support as you and your wife progress through this. If your wife is interested, I would encourage her to join us as well. We are a very close-knit group around the world!

From the little I know, it sounds like option #3 seems to be the most recommended way for dealing with anticoagulation during a pregnancy and that is what you have chosen. I know that it continues to be somewhat of a mystery as how to proceed.

One of our members here is an anticoagulation expert. Al Lodwick is a pharmacist and a registered anticoagulation specialist. He runs his own Coumadin clinic in Colorado and travels world wide, speaking to medical groups on warfarin (Coumadin). I would highly recommend taking a look at his site www.warfarinfo.com. Al checks in here frequently.

I had my 2 children prior to my St. Jude mitral valve replacement, but I do know that getting pregnant again was a concern. We finally made the decision and my husband got "clipped". We made this decision because of our beliefs that if I were to get pregnant, termination of the pregnancy was not an option. So I can certainly relate to some of the thoughts that must have been going through your head when hearing the news.

You have my prayers.
 
I too, have no advice to offer. Thank God my first surgery was a repair that lasted seven years. That was long enough for my husband and myself to have our children. My valve replacement happened when our daughter was five and our twin sons were three. I can only say that I will pray for your wife, your unborn child, your son, and you. LINDA
 
Anthony,
Welcome to our family. I am sorry you and Willow are facing such a tough time to have children when it seems so easy for the majority of the world. I am sure you will find the support here that you seek.
I agree that the option you have chosen is the best for the situation. Prayer will be the best that there are no clots formed or that there is no issue from the 3 weeks your wife was on coumadin. I, too, believe in the power of prayer and you will find the majority of us here do. Love and prayer can make the impossible possible.
I wish and pray for the best for you and Willow and your family. Please keep us updated and we will support you as well.
 
Quote: Once we get through this pregnancy we plan to have Willow's tube's tide. If she miscarries I have decided to get clipped. But it's our decision not our families. Infact we haven't discussed this with them and we don't plan to.

I don't think you need our advice, just our support. You are making good decisions all on your own.

We have another member, Christian, who reported his wife's conditions throughout their pregnancy. We were able to read along through the months until 'our' baby was born and then celebrate with them. They presented us with a beautiful baby boy who is more than a yr old now - maybe two. It has been helpful to other members. Yours will be interesting for all of us if you will just stick around and let us know as things develop with your wife, you, and the baby. We'd love to be a part. Another benefit is that others coming after you will be able to take your story and gain advice and experience from you.

Thanks for coming in and sharing.

p.s. you are wise in opting for a vasectomy - you could do it now and get it over with.
 
Anthony:

Best of luck to you. My wife went through a similar ordeal in 2004, though ours was far less challenging than yours. She opted to get pregnant before her first surgery and had no problems. She had a successful mitral valve repair a year after our son was born. He's nineteen months old now and they're both healthy and happy.

I wish you all the best.
 
no advice

no advice

from me either, You and your wife must do what is best for you and what you belive God is leading you to do.
Either way you found a great support community here!
praying for the best with this pregnancy and your decisions.
 
A and W

Will put you both in my prayers. Good luck going through this.

Evelyn

PS just remember tying Willow's tubes IS surgery again.....a vasectomy is NOT. Why would you want to put her through anesthesia again. JMHO
 
Hi Anthony,

Welcome. Thank you for posting your story. We wish you all the best in the coming months.

From what I have read in the past.........option #3 would be my choice. We were able to have one child before my MVR. She's now 10 and I think we have moved pass the point of having another. Though, I do feel we are missing out on something great! I commend you and your wife for your decision.

Please keep us posted on progress:)
 
Just to clarify in regards to me having a vasectomy. They can actually tie Willow's tubes at the same time they deliver the baby. I don't want to take additional risks with Willow. The doctor thinks this is a good way to go. But if something happened which required Willow to have her tubes tied as a seperate surgery I am opposed. In this case I will have a vasectomy. Either way we will adopt from this point on. Thanks for all your support.
 
I think Willow will be safe during the C-section with the tube tie. I do agree...not to have a seperate elective surgery! One reason I have never gone for that particular surgery. May be a simple solution for someone not dealing with a blood thinner. For me...I feel it's risky business.
 
From what our doctors have said, and from reports of friends - many doctors will advise, as a separate "stand alone" procedure, a tubal ligation is much more complicated and carries a greater risk than a vasectomy for anyone, not just those of us with medical issues. My OB/GYN would do tubals at time of delivery when requested, but really tried to stear couples towards vasectomy if the issue is addressed at a different time.

Anthony, it sounds like you have done a lot of research and put a lot of thought in to this and it also sounds like you are right on track with current thinking in the areas of pregnancy and sterilization. I know the next several months are going to be filled with anxiety and worry. Take it a day at a time. Stay positive. Enjoy the beautiful summer. Keep us posted on how things are going.

It also sounds like you have a supportive family around on both sides. But don't hesitate to ask them to back off if some "support" becomes too stressful.
 
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