Subsequent regnancy

[juliemcculloch]

In 1998 I developed PPCM during an induced labour. It's a small miracle I survived. My Cardiologist didn't think I would return to normal and thankfully I have after 4 years. My husband and I have since decided that we would not have any more kids but I now find myself pregnant and don't know what to do. I have been strongly advised to have a termination and I am truly devestated at this option. I have been given a 50% risk of death if I go on with the pregnancy. I don't want to terminate but I do want to see my son grow up. Any advice?

[JAMESFETT]

First of all, from what you indicate, you are in the most favorable group of PPCM patients with regards to subsequent pregnancies: you have returned to normal heart function since your diagnosis of PPCM. My experience with anyone in that category leads to two conclusions:

1)You will NOT be in danger of dying from relapse of heart failure,
2)You have only a small risk of experiencing a relapse of heart failure (I would say, less than 10 per cent).

Therefore, I think you should do well, but in order to appropriately monitor the subsequent pregnancy, here are three things to do in each of the 3 trimesters (first 3 months, 2nd 3 months, last 3 months) of your pregnancy and sometime arouind 2 to 3 months after delivery:

1)Echocardiogram to establish base line and to detect any deterioration.
2)Blood BNP to detect evidence for left ventricular systolic failure before any clinical signs or symptoms develop.
3)Blood hs-CRP to know if developing evidence of inflammatory process (remember, the level will go up somewhat just from normal pregnancy, we think the critical level is somewhere around 10 mg/L. Thoughts and prayers.

James

[Lisa V]

Dr, Fett has given you wonderful advice and advice that should not be taken lightly..............We have had about 20 woman go on and have babies after PPCM and they are all still with us. The number maybe slightly higher or lower but they have all gone on to be healthy with healthy babies. I am sure that more woman will respond to this thread, woman who have gone on to have babies after PPCM and woman who are currently pregnant after PPCM. Please read and listen to what they have to say before you make any hard decisions.....................Glad you found us.............WELCOME

[mom2gageandkeely]

Hi Julie!

I just wanted to let you know that I had PPCM in 1997. My heart function was 54% ( low end of normal) when I found myself in the same situation you are- pregnant and scared and advised to terminate! After alot of praying ( and some help from Dr.Fett) I did not terminate and my beautiful baby girl is now 4 years old. I was told by atleast 10 doctors to terminate, I believe simply because they did not understand the risk of subsequent pregnancies or have any information regarding such an important life aletring decision. What ever you do decide we will all understand AND BE HERE FOR YOU. The ladies I have became friends with on this site and with Dr Fett's valued information I think you have a pretty good chance of it all turning out just fine. There has been quite a bit of pregnancies after PPCM. If you have returned to normal the odds seem in your favor. My doctor did alot of research for me and he gave me a less than 1 % risk of dying. ( he' wasn't trying to play God he just calculated current research) I still have that tiny peice of paper he wrote it on too! He was the only doctor that I found locally that was willing to do research and give me the best care while pregnant. My EF actually INCREASED to 66% after giving birth and has remained that way! If you would like to talk you can PM me or emailjenniferwatkins@verizon.net. It seems we have alot in common regarding our PPCM and second pregnancies. Good luck! JENN ( Also this site was not here when I faced this decision, I felt alone and posted to a Heart failure board. Dr. Fett read my post and emailed me and gave me hope. He also told my doctors what test he could do to improve my chances and we follwed them to a T.! )

[juliemcculloch]

Thank you for all the useful advise. I know this sounds crazy but although I am only around 4 weeks I feel that I am already struggling for breath, feeling faint and have the shakes. The probablity is that I am having a panic attack but I can't imagine how I'm going to feel at 6-7 months. My PPCM episode was particularly horrific, it was touch and go for a few weeks and my cardiologist thought my heart wouldn't return to normal. I was only 22 at the time and I never saw my son until he was 5 days old. My husband, parents, GP and Cardiologist don't want me to continue with the pregnancy. I am truly at a loss.

[JAMESFETT]

Julie, I know it is difficult to look at this situation objectively, and of course you are the one facing the dilema, not we who look in from the outside. I don't know what your current EF is, but you have said "normal" . Your physicians, you , and your family would be helped by looking at the recent medical reports about subsequent pregnancy in PPCM patients. Elkayam et al, reported in the 2001 N Engl J Med, and identified the greatest risks to those who entered the subsequent pregnancy before returning to normal heart function. About 40 % of them went into heart failure again, and 3 women died. They also identified about 20 % of women in the group who did start the subsequent pregnancy with normal heart function but who nevertheless went on to heart failure; however, they all survived the subsequent pregnancy. My own experience in treating scores of PPCM patients (you can find an abstract of many of our studies in an Entrez PubMed search) is that many of them have a relapse of heart failiure, BUT a large portion of PPCM women do tolerate a subsequent pregnancy and also go on to complete heart function recovery. The favorable group is to be found in those who normalize their heart function after the first pregnancy. Right now you describe feelings of breathlessness. Is that due to real decrease in heart function ( in other words, is your EF reduced?) or is it related to stress and anxiety over this issue? You need the objective medical findings to help know between the two. In any event, this is understandably a huge decision for you that it will be helpful for you and your family to discuss this with counsellors/specialists who can help you find your way. Also, the current conventional treatment (diuretics, ACE-inhibitors, Beta-blockers) of heart failure in PPCM patients is very effective, and mortality rates are very low. Prayers and best wishes,

James

[mom2gageandkeely]

Thank you for all the useful advise. I know this sounds crazy but although I am only around 4 weeks I feel that I am already struggling for breath, feeling faint and have the shakes. The probablity is that I am having a panic attack but I can't imagine how I'm going to feel at 6-7 months. My PPCM episode was particularly horrific, it was touch and go for a few weeks and my cardiologist thought my heart wouldn't return to normal. I was only 22 at the time and I never saw my son until he was 5 days old. My husband, parents, GP and Cardiologist don't want me to continue with the pregnancy. I am truly at a loss.


None of it sounds crazy. I was 23 the second time around. My doctors, my husband, and everyone involved was against me having another child. I felt scared, short of breath, restless, high heart rate etc you name it. My cardiologist even made an appt for me for termination. I did not want to leave my son and family. I did not plan on having another child, actually I was against it. I was terrifed that I would become ill again. I had a terrible ordeal with PPCM as well. I found faith somewhere out of the blue. I made the decision to continue the pregnancy. I told my doctors, I found a new doctor that I trusted ( high risk), my husband was ok with it but not the route he would have gone. My mom was a wreck and obsessed over me. And I was OK. I had peace I decided God gave me that chance and it was worth the risk. I thought of the baby and how much I loved my son that was already here and I couldn't play favortism, to me she was already real and I just knew. When I look at her and think that I almost aborted her it makes me sick to my stomach. I am pro choice- I will understand if you do not continue it is a really hard thing to do. I honestly can say that it was the strangest most agonizing decision the first few weeks I was pregnant. AFter that I never doubted my choice was right. I took all neccasry precautions and took charge of my health. For me it had been 4 years which is more favorable, the more years since your last birth the better odds you have. I just want you to know you are not alone and I have been exactly in that situation. Most doctors do not have the information about PPCM that they need. I was 4 weeks when I found out as well. I called DR Elkayian and repeated my call until he called me back to answer my questions. I talked to Dr Fett, I researched and I decided I would be okay. I know things could have turned out for the worse but it was just something I felt that I had to do. As soon as I decided I was going for it my panic attacks stopped. I wouldnt hear of my family telling me anything negative, granted I am a very stubborn person! Please do not feel as this is a death bed for you.. Even if it did reoccur it usually happens in the last trimester and they can induce you, that was the plan for me. The chances of death with reoccurence are so low I compared them to walkinga cross the street. I know That I made the rightc hoice for myself. My ef actually improved after her pregnancy- no joke! I can try to give youa ny informatioon you need. Once again I am not anti abortion trying to "save" you I am just trying to help since I have been there and I know you feel the same way I did and I needed all the help I could get. I just cant imagine life without my little girl. Knowing her If I could choose being disabled and in heart failure and having her here or being fine and not having her. I would bring on heart failure in a heart beat......But thos are all just chances and odds no one knows what truly will happen. Life is not a guarantee. You could choose toe nd the rpegnancy and die from bleeding. kwim? or choose to go on with it and have a healthy pregnancy and die walking across the street..

I hope I have helped- if not just tell me to stop talking

[tinabowen]

With the right care and meds you have a big chance of surviving..

I just had my post PPCM baby 8 wks ago and I became pregnant with him only 6 months after I was diagnosed and my EF is still 60%..
It is a risk but with the medicine and care today not a big one if you EF is normal..
I had panic attacks when I was first pregnant I was so scared but learning what I have from these ladies helped me so much.

[juliemcculloch]

Thank you very much for the advice. My heart has returned to normal (after around 4 years) and my Cardiologist has discharged me 1 year ago. I'm on no meds but I am don't know what my EF is? I believe I was very lucky to survive the first time and feel that I might not be so lucky this time but I have a few weeks to come to a decision. I want to thank you all again for the great information and support.

[miracle baby]

I choose not to have anymore so I can not advice you about that.
I can tell you that alot of women on here have done well, It's good that you're back to normal.I'm sure you'll be okay with alot of supervision.I'll pray for you and your family.

[Delores]

God bless you Julie. He will provide for you. Just do your part and stay proactive in your medical care. You can do this!!!

[mikeyandBellesmommy]

I did have a reoccurrence and I AM here to talk about it. It wasn't as bad as it could have been because I had great care and they caught it super quick. My EF was normal when I started the PG and went down to about 40% when they caught it.. They took my son at 36 weeks and my ef went back up to 50% within three months and now it is around 55% aftet 18 months.

With my first PG my ef was at 15% and I was very very sick I almost died in the hospital 2 1/2 years after I went on to have my son.. Even with a reoccurrence you can survive and live a happy life

I will not say I wasn't scared and that I am still not scared I damaged my heart so much I may have problems in the future, but I wouldn't change a thing my son is amazing..

I think it is a very personal and hard decision for you I am sure in the end you will make the right choice for you and your family..

[juliemcculloch]

Dr Fett,

I believe my EF was arounf the 15% mark, as I have been discharged from my Cardiologist I imagine my EF is normal, I know my heart is not enlarged and my LVF has returned to normal (at last Echo my heart was describe as "looking smashing") Does the disease normally return more severe in subsequent pregnancies? If the Doctors know what they are looking for can they not treat PPCM instantly? I was on Warferin, Perindopril. I have been off all medication for around 3-4 years. Will my heart be damaged in a way that it might not cope this time around?

Thank you in advance.

Julie

[JAMESFETT]

You are asking the right questions. I would say your greatest need right now is to know what your current echo shows. I presume it is (will be) entirely normal with an EF greater than 50 percent. But you must find out for sure soon. Then you will have a basis to proceed with a decision to continue or not continue your pregnancy. From current understanding of PPCM and subsequent pregnancies, I think it is safe to say:

1)It doesn't matter what your EF was at diagnosis of PPCM originally. Even those with very, very low can and do recover completely--that appears to be your situation. In other words, the first diagnosis of PPCM EF is NOT predictive of outcome.

2)If a person with PPCM starts the subsequent pregnancy with normal heart function (EF over 50 percent), the likelihood of a relapse is less than 10 percent, and if a relapse occurs, and is treated appropriately, there is no evidence that the relapse is worse or leaves worse results so far as future heart function.

3)If a person with PPCM starts the subsequent pregnancy with ABNORMAL heart function (EF less than 50 percent), the likelihood of a relapse is between 30 and 50 percent; if a relapse occurs there is a higher risk that she will be left with permanent damage. Even so, the risk of death is low(maybe around 1 to 5 percent, need more observational studies to be sure--any risk is bad, isn't it?--because of effective treatment.

4)It is possible to recognize a relapse of PPCM heart failure early (even before clinical symptoms) during a subsequent pregnancy and to start effective treatment early with a good response to treatment. The way to do this is to monitor echocardiogram, blood BNP, and blood hs-CRP --mentioned earlier--during the subsequent pregnancy.

James

[juliemcculloch]

I was back at my Gyno yesterday for a visit and although she told me I would be given the best possible care they could provide there was a huge possiblity of a recurrence (too high in her book). I would be transferred to a hospital that specialisies in Heart Problems many miles away and I might have to inject myself each day with blood thining drugs (not an idea I relish) I thought the odds of 10% were quite slim but she seemed to think they were really quite high. I have 7 days to come to my descision. I am terrified and can't see how I can possibly come to a decision. One minute I convince myself that I will be fine and the next I am terrified that I don't see my son again.

[SerenaWelsh]

Just to share experience - I, too, had to inject myself with Lovenox (for anti clotting). I really was quite a baby about it and DID NOT want to do this. However, after the first day, I had no problems. The shots are Sub-Cutanious (under the skin) - not in the muscle, and really, truly do not hurt.

Once hospitalized, I was put on Heprin, and was given more shots a day than I could count. They also did not hurt. I did have issues because of the heprin (I started urinating blood, I cut myself shaving and thought I would bleed out - but I was over dramatizing).

I'm just telling you this so you don't let the shots become a determining factor. They're really a very small inconvenience in the big scheme of things.

Did your doctor mention that the shots would only be necessary if there was enlargement or decline in function - or did she indicate you would be taking them regardless?

[miachic]

Julie - I just read through all the posts in this section on your thoughts. Though none of us can make a decision for you, I hope that someone has given you some hope through their experience. It is such a personal decision between you and your husband and God. I have total faith that God doesn't give us anything in this life that we can't handle. He is the author in our books of life and the One that makes everything happen for a reason. I do believe that he grants us with situations just like this one to build our faith in Him and to see how much we trust and believe in Him to finish the good works in our lives that he has started.

That being said, I'm sure you will spend the next seven days with many different thoughts and emotions coursing through your body. I only hope and pray that you will see that you have been blessed with so much to look forward to. You are blessed to live where healthcare is advanced and where we have so many interventions, therapies, precautions, etc. that can be done and taken. You are blessed to have one child to look down on and consider in this situation. You are blessed to have the opportunity to have this little one growing inside of you. What a miracle in itself!

I pray that as you deliberate over this agonizing subject that you will find peace that passes all understanding and that you will look to God to be your guide! He says "Be still and know that I am God." I pray that you find peace and quiet time to be still and wait for an answer.

[carriep]

Julie
I've been reading your updates and what the other women have said regarding your situation. I am currently 13 weeks pregnant and found myself exactly where you were 2 years ago....an ef of 15%. Now I will admit I never was scared for my life or out of commission for longer than the week I was in the hospital, but in hindsight it was pretty traumatic.
My husband and I left up to God to make this decision for us. That's the step we took, and it's not what everyone does. But I also educated myself in the event I did become pregnant and had a consult with a high risk ob that sees this condition 6-7 times a year and discussed it at length with my cardio. The high risk ob did not sugar coat anything (ie that it would not happen again), but he did say that nothing is going to happen without anyone knowing and outlined the steps we would take in the event I relapsed. He also said that he's not concerned about it reoccuring until 3rd trimester as my ef was 65%. I do have shortness of breath and a few crappy dizzy spells but he said this is all normal. Its just very hard to remember what normal is sometimes, especially when you are only the lookout for PPCM to bite you again.
My cardio is not excited by the pg but will work with me and help me. I had an echo in June (my baseline) and another in Jan at 16 weeks. I also see him at that time. Should I drop in ef, I will be placed on coreg to help my heart. I am having blood tests done (ones recommended by Dr. Fett) next week.
Is there anyone in Scotland (cardio, high risk ob) that you can consult with regarding other options? You sound very scared but willing to go through with the pregnancy with some support from someone. It's always a good thing to find a second opinion. Or you could be a big pia like me and print off tons of info from this website and take it to your dr:) I mean, you do need some ammo. Drs are very scared of this condition bc they don't have the answers.
Good luck with whatever decision you make....I'll be thinking of you.

[melissamph]

Julie what is your current EF? I believe Dr. Fett has established as long as you were normal then you should be fine. Have an Echo done now. If you gave a current Echo EF then I missed it. I believe that things happen for a divine reason. I am praying for you.

[JAMESFETT]

While there are no guarantees, it seems to me that your decision would be much easier if you knew your current EF. If your current EF is less than 50 percent, you have a higher risk of relapse; if your current EF is more than 50 percent, you have a very low risk of relapse. In the " over 50 percent category" I indicated that the risk of relapse is estimated to be " less than 10 percent" I don't know how much less, somewhere between 1 to 9, I think evidence supports that.

James

[juliemcculloch]

Dr Fett,

I have just discovered my Echo was 64.7% last November and I have had another one done last week and the doctor said my heart looked like any other normal 29 year olds heart. My Cardiologist is still very wary but will support my in my descision, she will deliver me as soon as they see a viable baby regardless of my health. She also thinks having an Echo every month is a good idea, the down side is I will be in a hospital (speacialising in heart care) far away from where I live and I may need to be hopitalised for a month or so if I am unwell (these are the negatives) but at least we know what to look for this time around. I am very nerous indeed, (terrified for want of a better word). Thank you for all the advice you have given, I think without it I may have come to another conclusion that I would have regretted for the rest of my life.

Julie

[Lisa V]

I am glad that you seem more at ease with your decision and how your health will be handled during the pregnancy......Please keep us posted on how you are feeling as the pregnancy progresses...................

[JAMESFETT]

You are certainly in the most favorable group for being able to safely come through another pregnancy. Furthermore, you are in good hands, you know what to watch for and you will be closely monitored. I expect you will do well, and that is my prayer. If we only had a national or regioinal PPCM registry we could record your experience for eventual documentation as we learn more about risks for subsequent pregnancies.

James

[KellyDL]

I've been reading your posts and I'm so glad to see that you made the decision that was right for you. It was your choice to make, but I must say that I smiled to myself when I saw that you decided to have the baby! :) I hope that you keep us posted as your pregnancy goes along. You'll be in my prayers.

[miracle baby]

I'm happy for you that you're having your baby.I know it was a hard choice and you're scared but you'll be ok and we're here to offer you the support you need.

[Tammy]

I have PPCM with my 1st in 2000. I went on to have another baby who was born in 2003.
I looked at it as that this time we know I have this and we can look for the signs and treat it before the heart failure happens. This is what I told myself.
I stayed as postive as I could since I know the my attitude can have an effect on my overall health.
I didn't have a relapse and my Post PPCM baby will be 2.5, she'll be 3 this April.
I wish you the best with whatever you decide to do! :)