Hi all,
First post here! I’ve recently found out I’m pregnant - Great news! However I have a mechanical tricuspid heart valve and on life long anticoagulant warfarin, and have been advised of the major risks going forward with the pregnancy - Not so great news!
I just wanted to reach out to see if anyone could share similar experiences (good or bad)?
thanks in advance 😊
I think you probably need a breakdown from the docs. cardio and obstetrics as to what they expect might go wrong. Exactly why you should not continue with the pregnancy I had a first and only baby at 41 and I had various health issues and now I know I quite likely had a hole in my heart as well at the time.Major dilemma was a rare condition that may have meant I would lose my sight to blindness if I continued with pregnancy.But I decided to go ahead based upon what I was dealing with. That finally will also be your decision. People give birth under all kinds of conditions so get all the info. and then weigh up all the pros and cons.I wish you luck and hope it all works out well for you.
Thank you for your reply, and kind words.
I have had many conversations with the various doctors so I know all the possible complications, and things that could go wrong. I wanted to write a post more to hear of others experiences of pregnancy and warfarin so I can create a realistic picture of what to expert, and just to get some first hand accounts to compare with all the stats and medical talk the doctors give you.
Hi
I'm a member of a Facebook group around Aortic conditions and I know that one of the members has just had a baby. There may be others too. The group is UK Aortic and Heart Defects Pre and Post surgery. I'm sure that somebody will be able to help you there
Joanne
😊
Hi Joanne,
Thank you for your reply. I’ll definitely have a look for them on FB. Thanks for the advice 😊
Hi Ri_May
Congratulations on your pregnancy, wishing you and baby a safe journey together and arrival.
I have a heart condition but not the same specific issue as yours.
To cut a long story short, I had my heart condition through 2 of my pregnancies but it was only known about for 1 of them. I was closely monitored by a consultant who specialises in cardiomyopathy in pregnant women (every 2-3 weeks).
Being very blunt (I don’t wish to upset you) it was made very clear to me that if the worst should happen, my health and wellbeing would be prioritised over the baby’s.
My youngest daughter was delivered at 32 weeks due to my declining heart health. She is still here, now almost 18 months old (corrected) and other than being little (she’s still in 9-12 clothes) you wouldn’t know that she was prem! She’s my little miracle and if I could go back, I wouldn’t do anything differently 😍
I would sit down with both your cardiologist and obstetrician and ask for the facts about the journey you’re about to embark upon. Only you know what the right choice is for you but I wanted to share with you that it’s not all darkness just because we’re more complex to care for.
Best wishes
Soap 💛
Hi Soap,
Thank you for your lovely message, and so pleased to hear of a positive outcome. Glad your little miracle is going strong ☺️
Do you mind if I ask how the early birth went? I have been advised similar, in the sense that they will need to prioritise my health first, and the baby may be delivered early.
Thank you Ri_May
Hi Ri_May
Of course, I had a “planned emergency” c-section at 32 weeks exactly (2 months early).
My daughter had a rocky start and we did nearly lose her when she was only a day old but she’s a little fighter.
The decision to deliver early was because I lost 6% of my heart function in a week and I was experiencing more symptoms.
If it helps, my obstetrician told me that if she could get me to the following weeks of pregnancy (from the perspective of delivering a healthy baby):
28 weeks she would feel cautious
32 weeks she would be happy
35 weeks she would be laughing (apparently all baby does from this point is add meat to the bones as she said)
I hope this helps alleviate some of your worries. The best piece of advice I can give you is listen to mindful hypnobirthing by Sophie Fletcher (if it’s of interest) I used this book for all 3 of my children and it helped me to keep on top of my anxiety through my pregnancy as well as the births.
Best wishes
Soap 💛
Hi Soap,
Sorry for the delay been a bit manic with appts and fitting around work. That’s good to hear about the healthy baby and delivery per week. I spoke with my cardiologist yesterday and she advised if the pregnancy is going well, and no complications come up then they will try to let me go as far as possible. They would only intervene if I developed a blood clot and it was affecting the function of my heart which is good to hear. Also said that although tricuspid is thought to be more risky then mitral and aortic in terms of blood clot risk, it’s slightly easier to treat then mitral and aortic because of the positioning being on the right side, which in a very scary outlook we are taking as a small win 😊
At the moment I’m planning to continue to see if we can get the the second trimester and will just take it day by day.
Thanks for your support x
Hi Ri_May
Please don’t apologise or feel pressure to reply. I completely appreciate that you have a life outside of this forum and I’m not offended in the slightest!
I am so pleased for you that you’ve had what sounds like (overall) a positive conversation with your consultant and I am sending positive thoughts to you, your partner and your baby for a journey together that is filled happiness excitement and hope - I sincerely hope you are able to rest a bit easier now and are starting to enjoy your new chapter!
Best wishes
Soap x
Hi, congratulations on your pregnancy! I’m sure it’s very daunting hearing the risks. I’ve not been in your position but underwent aortic valve replacement in June 2022 and opted for a mechanical valve so am also on lifelong warfarin. I have a son who is just turned 2 and had long discussions with the drs after he was born about which valve to opt for- I understood a further pregnancy would not be recommended whilst on warfarin but essentially I felt v lucky to have one healthy child and wanted to get better for him so opted for the mechanical valve. I have tried to come to terms with not having further children but want to talk it over with my cardiologist one last time before I put it to bed. I’ve done a lot of research myself and can see there are various approaches re anti-coagulation for pregnancy none of them perfect unfortunately and each with their own risks either for baby or mum. Have your drs recommended a switch from warfarin to something like enoxaparin injections during part of your pregnancy? That seems to be an approach some drs take?
You make a good point about the anticoagulants there Winterwalker - I had to self inject daily whilst pregnant and for 3 months after; it became more difficult during the last 4 weeks of my pregnancy mainly due to the skin being stretched and I kept worrying baby was going to kick whilst I was injecting and hurt herself! I was on fragmin I think although the specialist always referred to it by a different name.
Hi Winterwalker,
Thank you 😊
It is scary to hear about all the risks, I had a letter this week outlining all possible outcomes and the percentages of risk, and seeing it there in black and white was very daunting, I think it comes to a 20-25% chance of things going smoothly 😬🤞
It’s hard though as we were denied IVF (planned surrogacy) last year due to the risks, so it feels like this is the last chance for our own child.
In terms of the warfarin, my cardiologist strongly advises to continue on it throughout the pregnancy. There is an undeniable risk to the baby, but they believe that the risk to come off the warfarin is higher for me then to the baby if I stay on it. I feel awful potentially subjecting my baby to it, but I have an appointment today to discuss the risk in more detail. I think because I’m on a lower dose, they think it’s is safer to be on it, and I also need to keep myself safe in order to keep the baby safe. It’s such a messy situation to navigate with anticoagulants and pregnancy.
I did switch to heparin in a previous pregnancy, and that caused bleeding in my ovary and resulted in emergency surgery to remove an ovary/fallopian tube and clean up a pelvis haemorrhage, so although there are risks of fetal warfarin syndrome, I think in my case staying on the warfarin will be the best option. It’s a personal thing though, and you have to take in to consideration each individuals own risks and needs.
I hope you get to answer all your questions about another pregnancy with your doctor and get the reassurance or closure you need ❤️
Thank you for your message.
Ri_May
Thank you. I wish you all the best with your pregnancy Ri_May it sounds like you’ve had a really difficult road to get to this point and are made of strong stuff! It sounds like your medical team are really on it with giving you thorough (but scary!) advice. I also hope you manage to get in contact with someone in a similar position to chat through the emotions and stresses of what you are going through, I know when I was preparing for my surgery all I wanted was to talk to someone going through the same thing.
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