Pregnancy with a mechanical valve story

[TXGal]

A few years ago my husband and I decided we were ready for a child. I was very curious about having a child of my own with a mechanical valve. My cardiologist introduced me to a woman here in my small town that had decided to try pregnancy with a mechanical valve. I decided to contact her after reading many posts recently from women who were thinking about pregnancy and mechanical valves. (FYI, I had my baby through surrogacy after hearing her story)

Her name is Mandy and she asked me to post this for her since she is very busy (also only has a yahoo email so had problems joining)..

Here is Mandy's story:

"I saw a specialist for high risk pregnancies in Austin before conception. He wrote all this I'm about to tell you up for both my cardiologist & OB/GYN because both of them needed to be in on the details & ready to take action when I conceived. Both of them also had to be willing to follow me as a high risk pregnant patient. I had to switch my cardiologist & went to over 5 OB/GYN before I found doctors willing to risk my case. It just wasn't common where I lived at that time.

The specialist said since I had no other risks & was healthy that I could conceive & do pregnancy tests every other day. Stay on coumadin during that time. As soon as I barely saw a change in the lines on the home pregnacy tests then call my OB &/ or cardiologists to get a blood pregnancy test done to verify it. Once verified then stop coumadin immediately & start Heparin. My Heparin shots were 2-3 times a day depending on my PTT level. We very quickly found out that the Heparin was VERY sensitive & I got too thin or too thick very easily. This is why most people are not discharged from the hospital until they are off heparin because it is dangerous.

I had several spontaneous (meaning I didn't bump or cause the bleed) bleeds that I was hospitalized for during my pregnancy. The worst was 3 Liters in my Right thigh when I was 6 mths along & I ended up on crutches & had to let the blood just reabsorb into my body. Too risky to cut me & let it drain.

Anyhow, Birth plan between everyone was vaginal delivery because c-section very dangerous with cutting etc. . . Plan was as soon as in labor stop heparin & resume 12 hours post delivery to give body to clot a tiny bit but not enough to get clot on valve etc. . . So, for me - my labor did not progress at all after my water broke & even given meds to help me. It was horrible labor & but I just did not dilate past a 1. They had no choice but to do a c-section since my water had broken so long before. They did the c-section (daughter perfect) & thought things okay but I was in horrible pain all night. The next morning when OB made rounds he looked at incision & it burst open & blood everywhere. My blood count dropped & for days got lower & lower but they couldn't find where the bleeding was coming from plus didn't want to cut on me again cause it could make it worse. I coded & was taken to ICU for 5 days where they continuously pumped platelets & Red blood cells into me.

Finally a Radiologist who had just returned from training on a new procedure decided to try it on me. Don't know the name but explained it like spraying sand all around my uterus to clot everything off. It worked!! I also had developed Heparin induced Thrombocytopenia which caused many more issues & another reason why I couldn't stop bleeding & my platelets dropped so fast. The Hematologist had a IV med shipped in that was very rare & labs had to be drawn & called to him every hour on the hour for 3 days. But it helped save my life also. My c-section incision could not be re-sewn because of fear of causing more bleeding so it was left open & I had to pack it with saline & gauze for 4 moths until it slowly closed up on its own. Very hard & painful with a new baby in your arms. It is by God's grace I'm here today!!

Would I recommend this to another woman. So hard to say this. I wouldn't trade my daughter (now 5 & 1/2) for anything. I was willing to risk my life at that time to have her. I wouldn't & didn't do it again. My hubby had a vasectomy when my daughter was 8 weeks old (my c-section was not even healed yet). We adopted our 2nd child & possibly plan to adopt a third. It is certainly not worth risking my life again to leave these kids without their mommy. There are sooo many precious babies & children who need familes & let me tell you first hand that you love them just the same. For me the difference was being able to enjoy my 2nd one this time around because I wasn't trying to hang onto my own life. Feel free to ask me any questions ladies My hubby is here for any of your husbands questions or fears also. Blessings!! "

Mandy

 

[Ross]

Kristen how long ago did Mandy do this? Reason I'm asking is because it seems the newer methods use Low Molecular Weight Heparin injections and aren't nearly as dangerous. I'm still not discounting the overall fact that having a baby on Coumadin isn't dangerous, because it is, but it can be done and do a believe a little more safely then hers was.

Also, please inform Mandy that all she has to do to register is click on the "Contact us" link at the bottom right of the page and we'll help her out if she's interested.

 

[Lynlw]

Kristen how long ago did Mandy do this? Reason I'm asking is because it seems the newer methods use Low Molecular Weight Heparin injections and aren't nearly as dangerous. I'm still not discounting the overall fact that having a baby on Coumadin isn't dangerous, because it is, but it can be done and do a believe a little more safely then hers was.

Also, please inform Mandy that all she has to do to register is click on the "Contact us" link at the bottom right of the page and we'll help her out if she's interested.

Her daughter is 5 1/2. I could be wrong, but I was thinking she probably did get the low MW since she was getting shots a couple times a day (altho she had ptt done) and I thought regular heperin was just given thru IVs

 

[Ross]

Her daughter is 5 1/2. I could be wrong, but I was thinking she probably did get the low MW since she was getting shots a couple times a day (altho she had ptt done) and I thought regular heperin was just given thru IVs

Ah, your more alert then I today. See what happens when Ross doesn't sleep?

 

[Karlynn]

When I was looking into uterine ablation, the GYN that I saw did say that you can do heparin shots at home. He much preferred that to Lovenox because of the post-surgical bleed issue. These were his remarks and I didn't explore it any further at the time. I did get a PM from a VR member who told me that they had done heparin shots at home - not Lovenox.

Thank you Kristen for posting Mandy's story. At the very least it demonstrates what can happen during a mechanical valve pregnancy and you just never know what your own story will be. For ME, I would not risk it and chose that path.

 

[Lynlw]

Ah, your more alert then I today. See what happens when Ross doesn't sleep?

I got Don a single cup coffe machine for Christmas and the other day we got a variety of coffee K-cups to try, I am VERY alert today lol

 

[TXGal]

You are right Ross, things could be more advanced since it's been 5 years.. I just know for me it was very very hard to find any kind of research on someone who actually had a mechanical valve and had a successful pregnancy and this is something I contemplated for years and was a very hard decision for me. I'm not trying to scare anyone who is thinking about getting pregnant with a mechanical valve at all.. I am just sharing a friend's experience for the women on the boards who have mechanical valves and would like to have a child.. thanks

 

[Karlynn]

I don't know Kristen - in a way, I think it's something that getting somewhat scared and freaked out about is probably good. If someone finds themselves still wanting to do it in spite of their fear- that tells them something.

Much like we say that most surgeries go well with few complications, we also want people to know that there is still a chance that things won't go well. Fore warned, is fore armed.

I'm glad you posted the story.

 

[Lynlw]

I debated wether to jump in here, but decide I really wanted to add something and since this thread isn't a member asking for advice because they really want to get pregnant, I thought this was the safest time to put this out there.. My son was born with multiple birth defects and even tho there was nothing I could have done differently while I was pregnant, Sometimes I have just overwhelmed myself wonderring if, how, what to blame and it tore me up when he was a baby, with the guilt feelings even tho all the docs and nurses said there is nothing to feel guilty about I did., Still almost 21 years later I can go to that place and wonder what if, especially around his birthday and surgeries. Since coumadin can not only cause problems for the mom, but also the baby, I think that is something else just to consider, would you(not any person in particular, just general ) really beat yourself up IF you chose to chance getting pregnant knowing the chances are higher for certain birth defects and the baby was born with facial deformities or had other problems because of the coumadin. As a Mom making a choice about something that can hurt ME is one thing but I'm and adult and free to make choices, but it would be harder for me to chose something that can also harm the baby. I know you would love the baby with all your heart, no matter if it turned out 100% healthy or had major problems, but life can be tough.

 

[TXGal]

I don't know Kristen - in a way, I think it's something that getting somewhat scared and freaked out about is probably good. If someone finds themselves still wanting to do it in spite of their fear- that tells them something.

I agree, once my husband, parents and close family heard Mandy's story they encouraged me to just forget having a child myself.. I was so glad though to finally talk to someone who had been through it because my cardiologist was actually very supportive and said that I'd just be a high risk patient and that he'd be there for me if I decided to get pregnant. So the fact that he wasn't saying "NO way, too risky" was making me think that maybe I could do this (since I had noone for so long to share their story and knew of noone like me who had gone through this).. I looked all over the internet for statistics and couldn't find any information.. It was when I was down to making my very serious decision that my cardiologist's nurse asked Mandy if she could give me her contact info. because the nurse really didn't think I should go for it.. boy am I glad she did.. I met with Mandy for dinner and it was hard to hold back tears hearing her near death experiences.. I decided it just wasn't worth it risking my life and my baby's...

So, I just wanted to put this story out there.. hopefully it'll sway those who are thinking about going for it to re-think their decision now that they can read an actual story of someone that went through pregnancy with a mechanical valve.. I hope that in the future this changes for young women down the road who are in my situation.. Surrogacy & Adoption are both very expensive, but are basically our only choice..

 

[TXGal]

Lyn, you made some very good points.. getting pregnant while on Coumadin and all the risks involved aren't only risking the mother's health and well being, but the baby's too...

 

[Ross]

The moral of the story is, it can be done, but it's certainly NOT ENCOURAGED. The risk to mother and baby are too great in my own opinion. Some folks on Coumadin find themselves pregnant through whatever action causes such things.(I never figured it out, I always thought it was something in the winter air. Perhaps one day, some one can give me a clue?) It's for them that we post that it is possible, but again, I sure wouldn't want my wife to try it if she were on Coumadin.

 

[Karlynn]

Good point Ross. When I was younger I was terrified of getting pregnant. I was told, point blank, that it would risk my life and I could have a severely deformed baby. (This was about 15 years ago.) Since I'm pro-life, the thought of getting pregnant and having to make a life and death decision for me or a baby was too much for me to wrap my mind around. (So we went the snip snip route for DH.) If I was that age now, with the same concerns, I don't think I'd feel the situation was nearly as hopeless as I felt (and was told it was) back then. But it's still something that I,personally, would not sign myself up for. That being said, I certainly don't condemn those who do and we'll be here to offer support to anyone who comes here.

 

[deogloria]

Wow. Now I know why my doctors don't look happy when I tell them we're not "done" having children. (Aside from the typical you're-a-freak-if-you-have-more-than-two-children attitude.) I'm sooooo glad I'm getting a tissue valve. I'm just praying it lasts me through my fertile years, so I hopefully only have to have one more of these. I'm hoping by then they'll have perfected this new stent valve replacement procedure I've heard about. ;-)

 

[Tgamble]

Kristen i think you made a good decision. This is coming from someone who has had a baby in dec 2007 with a mechcanical valve and stayed on 5mg of coumadin throughout my pregnancy. My pregnancy was not bad at all, but I would advise MVR women to really think twice about it. I had wonderful doctors on stayed on me like glue. I didn't have any complications intill I delivery the baby. I loss alot of blood a week later after giving birth. But as far as that no problems at all. Because my pregnancy wasn't normal my doctors had me coming to the clinic about every two weeks starting from 5 weeks and then around 7 months 3 times a week. I pretty much knew everyone at the hospital by then. My son is currently 15 months old and very healthy. I just wanted a few of you know there are some success story out there. I'm very blessed and only wish the best for you and your babies. Good luck

 

[A New Beginning]

thank you for the postings on here. I have to be thankful i was able to have my daughter before my surgery. I was told today that it is better to have one that is cared for at 100% and given the best of all worlds, than to risk what i already have.

words i will live by

Aja

 

[Sherry]

Hello, Kristen, and thanks for sharing Mandy's story. There is so little info out there for women who want to have children after valve replacements. I was 33 when I had my vr and already had two kids. I did get pregnant after the valve replacement but lost the baby early on. My husband and I made a definitive decision not to try anymore. (This was before VR.Com so I really had no advice other than my very astute cardio.) Anyway, I've always followed these pregnancy threads pretty closely to see if anything has changed over the years. One of the members stories that I distinctly remember was that of Anthony's (wife's name is Willow). If you go to the member's list and look him up, you can look at the statistics section and read back through his old messages. Another member's name who had a pregnancy was Karen7, another you could look up.

Best of luck to you and your husband and hopefully, you'll find this information helpful.

 

[TXGal]

Thanks for the responses.. Again, I was just sharing this story as basically something to go on the record as to what could happen if you try get pregnant with a mechanical valve. There are stories like Tgamble who have no problems with their pregnancy. It's a hard decision for someone who is wanting children and has had a MVR. I decided it was too risky and had my child through surrogacy. We fortunately have a friend who has offered to carry a second child for us in the next year or so.

 

[Gnusgal]

It's stories like this that helped me make the decision to use a surrogate. And I know in my heart (no pun intended) that it was the right path for us. I don't presume to know what's right for anyone else, but I even though it COULD turn out perfect, I couldn't put my family through the worry of seeing me pregnant. I'd much rather everyone enjoy the idea of our babies growing and getting ready to enter the world. (Not much longer now!!)

Thanks, Kristen, for sharing another story. There are so few and it's important for people who are looking for information to be able to find it somewhere. I know it's always been difficult for me to find what I'm looking for because my situation is so unique.

 

[ticktock]

Kristen... amazing how strangers can impact each others lives just by sharing. I am 53 and way past child bearing age, but was told as a CHILD that I could never have children. Honestly, I just never considered it a possibility and went on with my rather wreckless and indifferent life.

Of course at about 35 I started looking back and wondering........ maybe I should have.. maybe I could have.... To this day I wish I had an adult child (does that make sense) but I don't. My life just never seemed to evolve to a point I could adopt or pursure other avenues. But reading this story gives me huge comfort somehow.... to know that my total trust in the docs "that time" was correct. Being without children leaves a hole in my life.... but I really don't believe it was a viable option for me. YOU and Mandy just confirmed it.

I have a touch of peace I did not have before reading this post.