Baby Lost - Heart Broken (Factor V Leiden responsible)

[KAB]

I am new to this site and wanted to share my story.

I was 18 weeks pregnant when i found out that our baby had died. I had to go into the hospital to be induced and give birth to the baby naturally. This is the hardest thing that i have ever had to do, i didnt want to let my baby go. I had a beautiful baby girl whom we called Katelyn. Luckily i was in a very supportive hospital, we were allowed to hold Katelyn and be with her as long as we wanted. We even managed to have a naming ceremony and a funeral at which Katelyn was cremated within the week after her birth. That has been a great comfort as now i have Katelyn's ashes with me and know that this is special.

My mum had 9 miscarriages (i am her only live birth). So this had always been a big part of my life. However when i passed the 12 week mark in my first pregnancy i was absolutely thrilled.

I had some blood tests done after Katelyn's death which discovered that i have Factor V Leiden Deficency (One gene). This is a blood clotting disorder and this probably caused Katelyn's death. I struggle to get through most days as i miss my baby girl so much. She should still be here with me. My husband has given me amazing support as he loves and misses Katelyn just as much as i do. Sorry this is so long but i had to get it all off my chest. Does anyone else have Factor V and if so what was the treatment for future pregnancies that your doctor recommended? Thanks for listening.

[Melinda]

Hey KAB,

I am so very sorry to hear about the loss of Katelyn. I can't possibly imagine the grief you must be feeling. I am glad that you found the hospital to be very supportive and that you were allowed to hold her for as long as you wanted to and were also able to have a funeral for her. These are such important things and I'm sure they will be of great comfort to you both now and in the future.

Thank you for sharing your story, it takes great courage to be able to openly discuss such a personal and tragic event. BB is a wonderful source of support and you have definitely come to the right place as sadly, there are a few of us here who have suffered tragic losses and can relate only too well to the grief you are experiencing. Obviously every situation is different and unique, but sometimes it really does help to know that there are others out there who have been through something similar. It makes the world feel a little bit less lonely. Personally, I have suffered 2 m/c - one immediately following the other. There have been two other ladies just recently who have suffered losses at 18 and 21 weeks respectively, and they will hopefully see your story and come and chat to you soon if they are able to. I just want you to know that we are all here to support you in this difficult time. I'm sure everyday feels like an uphill battle, but hopefully with the support of your DH and the people on this website who can offer shared experiences and support, you will feel a little less alone. In time things will get a little better.....it will take a while, but we will be there every step of the way. Grief is such a terribly hard thing to cope with and I'm sure you will have many ups and downs.

Don't feel bad for the length of your posts - we all understand the need to vent and get things off your chest, so please feel free to do so and know that we will help you in whatever way we can. Sadly I don't personally know anything about the Factor V Leiden Deficiency, but I am hoping that perhaps someone else here does and can answer your questions. There are others who have blood clotting disorders however, and the treatment is commonly a low dose of asprin that is prescribed by their Doctor. That said, I don't know how the FVLD relates to that and whether the treatment is the same. Have you been able to discuss this with your Doctor at all?

Take care KAB....and come and post whenever you feel like it and know that we'll be here for you.

[BumbleBea]

Dear KAB,

I am so very sorry to hear about the loss of your daughter Katelyn. It is an absolutely devastating thing to happen to any family and there is nothing that I can really say that will make it any easier for you.

As Tootie said though, it takes a lot of courage to post and share your pain and please feel free to post and vent whenever you need. Importantly take all the time that you need to grieve. I am also very glad that your husband is so very supportive of you. There is support on this site for him too should he want it.

About FV Leiden. You are correct it is a blood clotting disorder that places people at increased risk of getting blood clots in their legs and lungs more than people who do not have FV Leiden deficiency. It causes blood clots in both arteries and veins because the clots are unable to be broken down by our bodies anticlotting mechanisms because the FV is abnormal. It is genetically inherited. Most people who have this gene are carriers for it, and so may pass it onto their children (1:4 chance if your partner does not carry the gene). The blood clots affect the placenta in that they may cause it to infarct (like in a heart attack), or may just decrease the blood flow through it and lead to poor fetal growth.

As to how it is treated - I am not sure whether you would have even had time or the energy to talk about this with your doctor. I am not a haematologist, but from my understanding the evidence of whether to treat or not is mixed. It is said that FV Leiden only increases the risk of miscarriage (and it is usually late miscarriage during 2nd trimester) by 2%, and thus the evidence would suggest that there is not much benefit to treating unless there is a background of repeated fetal loss and 'high risk mum' ie, smoker, obese etc - that is things that make the problem worse. The evidence does not say that treatment is necessary otherwise, but I would imagine this information would be of little comfort to anyone who has just been through your experience.

If you do receive treatment, it is usually in the form of blood thinning products and usually involves injecting yourself with heparin once a day (through a needle like people with diabetes). This thins your blood and prevents clots. You would need to continue this treatment throughout your pregnancy and some weeks after giving birth, and then could stop. You would also need to see an obstetrician and a haematologist (blood doctor) thoughout your pregnancy for frequent check ups.

I am not sure that there are other alternatives for treatment.

In time, when you feel stronger make sure you have a long chat about the options with your doctors.

Thinking of you and hugs,

Regards,
Gabby

[Angel]

Hi KAB,

I don't know anything about Factor V Leiden Deficiency, but I just wanted to say how sorry I am to hear about little Katelyn. Don't apologise for your post, we are all hear to listen, and I hope that by posting on BB and sharing your feelings, it might help you get through this difficult time. Wishing you all the best. I hope you are able to find some answers in regards to the deficiency.

Take care...

[zola]

Hi KAB,

I'm so very sorry to hear about the loss of Katelyn....:hugs: for you.

I don't know anything about Factor V Leiden, but my OB has suggested that Antiphospholipid Syndrome may be part of why I have miscarried so many times.

Please don't worry about long posts... we've all had a few epics in our time. Just let whatever you need to say flow out. It can help you to grieve and we will never object to you sharing your feelings.

I hope that you and your DH can help each other through this difficult time, and we are here for you if you need us.

Take care.

[KAB]

Hi Guys

Thanks so much for your responses. I felt very touched.

It is horrible that so many people have been through these hard times. A child should never die before their parents. Its too cruel.

I am trying to keep my chin up but it is very difficult.

Today i got my second period since Katelyn's birth and i hate my body when that happens.

I am going to the GP today to ask some more questions.

Hopefully we will feel that we are ready to start trying again soon. I want to have some happiness back into our lives and something amazing to look forward to again.

Kab

[Melinda]

Hey Kab,

You're right, AF can certainly be an unpleasant reminder of your loss.

It can be really difficult to keep plugging away every day and to keep your chin up as you say, particularly when you are surrounded by reminders of what should have been. I hope that your GP is able to answer your questions today and that you can leave the appointment feeling like you have a little bit of direction about the future. It can take quite a while before you feel emotionally and physically ready to TTC again, and everybody is different in that respect. Only you and your DH can really decide on when the time is right. Whenever that is, you'll find all the support you need through that anxious time right here on BB.

Please let us know how you go at the Doc's today.

Take care.

[KAB]

The longer today gets the harder it is becoming.

We did sort of start trying last cycle (mid way but i usually ov late due to 32 day cycle) because we thought that if we got pregnant again that would be fantastic even though we probably thought it was a little soon. I had only had one af since Katelyn's birth.

Now that AF has come today, i felt ok to begin with saying that it is meant to be this way and we can try next month. I dont feel like that now though. I feel like i am never going to have another baby. I know that this is stupid because it is only one month in. Its just that i was lucky enough to get pregnant straight away with Katelyn so i just sort of hoped that the same would happen so that i didnt have to worry about TTC. But this is not to be. Now the next month of my life is going to be revolved around - i hope it happens this month. Also if it does happen this month then the baby will be due in March. March is Katelyn's month.

I know it is early days but i just want something to go right for us again without having to stress about what might or might not happen.

I miss her so much that i guess i am trying to get something good back in our lives not just this sadness and this place that we are in now.

[Melinda]

Hey Kab,

It really is only natural to be swaying between lots of different emotions and thoughts right now. One minute you think to yourself that perhaps it's for the best that your body has a little bit more of a break and has more time to heal, and on the other hand you think that you just want to be PG again right now because it will give you something positive to focus on. Please know these kinds of thoughts really are understandable and we've all had them.

It's understandable to want some happiness in your life after all you have been through. One life certainly can't replace another as you well know, but the feelings of desperately wanting to be PG again and to hold a little one in your arms is a feeling that I can relate to as well, as can many others here.

I know that you mentioned you had a naming ceremony and funeral for Katelyn, but I was wondering if you have done anything else to remember her by? It may help you to move forward a tiny little bit. You can only take tiny little steps forward right now, but any step forward is a step in the right direction. Personally, I wrote a letter, some poems, and put together a special keepsake box and bought a nice potplant. These things all really helped me, particularly writing the letter. I felt that I needed to ask 'permission' somehow to TTC again, and that I wanted our little ones to know that they would never be forgotten or replaced, that they were always part of our family, but that I needed to move on and I felt that out of respect for them, I needed to 'tell' them this.....none of that probably make sense, but I thought I'd share it with you as it's something that really did help me. It took me quite a while to write the letter....it was done in dribs and drabs as I felt able to, but I felt an immense sense of relief once I had done it. I felt that I had started to take some steps forward again. Perhaps you might like to think about something similar (or completely different!) that feels right for you, as it may help you to move to an emotionally better place IYKWIM?

How did you go at the Doctors?

[Angel]

Hi KAB,

Sorry to hear that AF arrived. It can be so frustrating when it takes longer to conceive than you hoped. And then you have the added stress of wanting a baby right now and at the same time wondering if it is too soon. How did you go at your GP appointment? Were you able to get some answers?

Take care and lots of inkdust:

[zola]

Hey KAB,

Did you get any answers from your Dr??

I know how shattering it can be when AF shows up... just another reminder that you are no longer pg. But it is a good sign in the fact that your body is recovering and you have new hopes for the future.

Wishing you all the best. *hugs*

[kirsty]

Hi Kab,
I am so sorry to read of the loss of your little girl, Katelyn (such a pretty name). I lost my little boy, Alex, at 18w5d so very much the same time period as you. I won't go into my details too much but I have a post in here called "An angel named Alex" that tells our story. I can only agree how much difference being in a supportive environment can make to the situation you are dealing with. Where we gave birth to Alex the midwives were wonderful. We also got to spend a great deal of time with Alex & I found that that really helped me with the grieving process, being able to talk to him & tell him how very sorry his Dad, big brother & I were that we wouldn't get to see him grow up. I know I found being very open & honest with my DH to be helpful (although we found that out the hard way after many "heated" discussions). I too like you hated my body the first time that :af: arrived & have just had my 2nd visit from her & still not impressed that she was here. I found it a really strong reminder that I was no longer carrying our precious child & that even though I wasn't really ready to move on yet my body was. I guess in the bigger picture I am glad that :af: has been because at least my body is preparing itself for when & if we decide to TTC & be PG again. Take each day as it comes & never be afraid to cry & let it all out. We are here to help & I found this forum to be terrific as you can say exactly how you feel & know that you will never be judged for what you say.
Sending my condolences & cyber :hugs: your way at this difficult time.

[Angel]

Hey KAB,

I hope you are okay. Let us know how you are going when you feel up to it. Hugs.

[meg]

Hi KAB,

Sorry to hear of your loss of your little KAtelyn. It is so devastating to lose our much loved babies. I hope each day is getting easier for you. Has your dr given you much more information. Like Zola, I am also a antiphopholipid syndrome person, which whilst it is autoimmmune related, it results in blood clotting, so similar to you. I will be taking aspirin during my next pregnancy, possibly heparin as well, depending on what the doc says next time I speak to him. I am not sure if you will recieve a similar treatment if it is blood clotting as I don't know much about factor V leiden.

It is really hard to embark on the ttc journey again. It is such a rollercoaster ride and I am so grateful that I have all the girls here a BB to help me along the way. It can be tough some days, so know that we are around to give you some support if you need it.

Take care, Meg

[KAB]

Thanks Ladies for your thoughts and support.

I dont work wednesday's (i have dropped down to 4 days a week since Katelyn died) so when i got here this morning and read all your messages it really lifted my spirits.

So i went to the doctor on Tuesday night. Basically the text book treatment for FVL is Asprin (100mg per day). Under my doctors instruction i am already taking this. However everything that i have read on the internet says that the treatment should be Heparin (low molecular weight) or a combination of Heparin and Asprin. So i questioned my doc on this. The recommendation actually came from the OB who delivered Katelyn. My Doc said he would call a specialist that he knows in Perth to get his opinion. The specialist agreed that he would advise me to take Asprin unless i have had more than 3 losses. But the final decision is up to me i can take the Heparin if i want. This makes me angry for 2 reasons: 1) Why is there two different treatments once you have had more losses? I dont want to have more than one. I feel like they have the attitude that we will try this and if it doesnt work it doesnt matter we can try something else and 2) Why should i have to make a decision. As a layperson how can i be expected to know which is the best treatment that is going to affect the rest of my life. So i have decided to go to Perth and see the specialist. I have made an appointment but i cant get in until the 27th of July. My doc says not to stop ttc though because i can always make a decision on the spot and treatment can wait a few weeks after we find out we are pg (as long as i am taking the asprin).

So i am really torn as to what to do. One part of me feels like i should trust my doctors and specialists as i have two opinions now and the other part feels like i should take the Heparin as then if something does happen to another baby then i have done everything that i could have done and not always wonder - might this have been different if i had taken the heparin.

It is so hard. The heparin has to be injected but we all do what we need to do to get a healthy baby and if this is what i have to do then of course i will do it. Can i ask for your advice on the emotional side of this?

Tootie, thanks for the support, your messages really help.

Angel, Thanks for the baby dust - you are the first person to send me that! Cheers.

Zola, Thanks, i know it is good that i am getting back to my regular cycle it just sucks that we have to have a cycle again doesnt it.

Kirsty, Thanks for replying it is so good to hear from someone in the same "time limit" as me, i dont feel so much of a freak for losing my baby so late now. When it first happened i hadnt known anyone who had lost a baby so late and not been a full term stillbirth. I am so sorry about little Alex. The midwives can be amazingly supportive cant they. The one that was with us when Katelyn was delivered (the specialist delivered her) was crying and it meant so much that someone else appreciated the loss of her little life.

Meg, Its hard to know that we have these disorders to overcome in the next pregnancies isnt it. Sometimes i think that if we didnt have anything wrong with us we could just hope for the best next time round and on the other hand at least we have something that we can try to treat.

I am so saddened to hear about all your little babies. My hear goes out to each of you. Our children are their own person from the moment that they are conceived, thats why it hurts so much to lose them. Other people dont quite understand that though. You dont until you get here.

Thanks again - Wishing you all a great day.

[Melinda]

Hey Kab,

You are faced with a pretty tough decision by the sounds of things and one that must be very difficult to make. I think making the appointment to see the specialist in Perth is the very best thing to do though, so that you can get his opinion yourself and really discuss every aspect of your concerns face to face.

The quandry you are facing is something that I struggle to accept as well, i.e. why you can have X treatment now, but Y treatment if you suffer another loss. I don't know why it is the standard practice in the medical profession to seemingly be so dismissive of PG loss or m/c before you have a certain number of them. To me this is awfully cruel and if a person does go on to have subsequent losses it does immense psychological damage. Particularly if after all of that and tests are conducted and treatment is prescribed which will assist you. There seems to be a certain belief in the medical profession that tests etc aren't conducted until you've suffered 3 m/c or losses which I just can't fathom personally. I was in such a state after my 1st m/c that they were prepared to do tests for me, but personally I think that if you request the tests, you should be able to have them in any event...i.e. it shouldn't matter what state you are in emotionally or how many losses you have had. I know of some people who have really struggled to find someone who will conduct the necessary tests for them because they have only suffered 1 or 2 losses. It's just awful. Sorry I've digressed a bit there, but the point is the same, i.e. that I can understand why you are upset and disappointed that there is one treatment now, but if you suffer a subsequent loss, there is a different treatment. It doesn't seem fair does it?

In regards to your specific situation, it is a terribly hard decision to make. I think you may have answered your own question though:

the other part feels like i should take the Heparin as then if something does happen to another baby then i have done everything that i could have done and not always wonder - might this have been different if i had taken the heparin.

This is such a huge issue for you emotionally and I think that if you feel that way, then you really should express that very clearly to your specialist when you see him so that he fully understands the emotional aspect of your loss and the impact it has on you for TTC again. I know that when I had tests conducted, they revealed nothing, but yet I went on to suffer another loss anyway, but I felt like I had to do everything I could to try and find an answer for what had happened so that if something was found, I could try my best to do something about it. It's a different situation of course, but kind of similar in that it impacted upon my thoughts and feelings regarding TTC again IYKWIM?

I'm not sure if any of what I have said here has really helped Kab, but I wanted to let you know that I think you are doing the best thing immediatley in terms of taking the asprin, and also by arranging an appt with your specialist. I think that emotionally you are the best person to make a decision about the heparin because TTC again following a tragic loss is really really hard and is full of anxiety, so I hope that by discussing this aspect with the specialist, he will understand your situation in more detail and will hopefully prescribe the heparin so that you will know within yourself, that you have done whatever you can.

[KAB]

Hi Tootie,

I see that you are 30 weeks today - CONGRATULATIONS that is a big milestone in my book =D>

Thanks for your thoughts. You are helping just by comunicating with me. It is so hard.

I dont know if i said before but i actually asked for tests before we became pregnant because of my mothers history with nine miscarriages. Anyhow my doc said no - that there was no need. I feel a bit guilty that i just accepted this because if we had of done the tests then maybe Katelyn's fate would have been different. I have discussed this with my doc since and he said to be honest he probably wouldnt have tested for FVL anyway. As it turns out my mum didnt pass it on to me anyway and my dad is in the process of getting tested but we think that it must have come from him.

Mu Husband has decided that he thinks it is ok for me to take the heparin and just make that decision and not worry about it. The way i said that sounds harsh. He really is very supportive and just wants to do everything like i do. I also said something along the lines of i just want to make the decision and forget about that part as i am sure that i will have enough to worry about with another pregnancy than be unsure about the treatment for the whole 40 weeks.

Well we really want to get prego again. That is hard to admit. I feel a bit guilty about that for Katelyn. But i have told her that she is the first and that if there was anything i could have done or do now to have her back with me for one more minute that i would do it in a second just to have her back - doesnt matter what it was. Also she was a miricle. We cant have her but it is exciting to think that we could have her brother or sister.

A few posts ago you asked me about writing a letter. There are lots of things that i have done to help me to deal with Katelyn's death. I will share them with you 1) We brought a standard rose and a nice pot to have outside (mu husband loves gardening), 2) When we had her cremated we put a few things in the box with Katelyn one of those things was a letter and a few photos etc 3) My husband bought me a gold K pendant and a necklace to wear 4) I am making up an album of the photos that we have of our pregnancy and of Katelyn and 5) i bought some little wooden letters and paint. I am making a bit of a sign to hang somewhere and another set of bigger letters to hand on our christmas tree every year. We also have a candle going for her when we are at home and one that we light on special occasions for her (like her naming ceremony and funeral). I have done a few other special things like that. The thing that helps me the most is that we have her ashes in a little round urn that fits in the palm of your hand. It is really sweet and i hang onto it all the time when we are just watching tv etc. That way i feel as though she is always with us. Our chaplain organised this for us at a time when we were not with it enough to make decisions about how we would feel in the future. I will be eternally grateful to her for the memories that she helped us create.

Well i am rambling on again.

Thanks for listening!

Kab

[Melinda]

Hey Kab,

Yeah 30w is a bit of a milestone isn't it! In all seriousness, I didn't ever think I would make it this far. I still can't believe this is really happening to me....I had myself convinced that I would never have a baby. I'm sure you can understand that the PG has been one that has been full of anxiety and fear for me. In fact, I worry all the time that something will still go wrong. I think it's sad that I feel that way, but unfortunately it seems to come with the territory.

I can't recall you mentioning that you had asked for tests before conceiving, but I do recall you mentioning about your mother's 9 m/c. How terrible that must have been for her. Don't beat yourself up for not forcing the issue of having tests done prior to conceiving. It's definitely not something that is routinely done. We all place our trust in our medical professionals, after all, they are the experts aren't they, so you do rely heavily on what they tell you to do. Try not to feel guilty about it, although that's way easier said than done. It's hard not to point the finger at yourself a lot of the time....I know I certainly did, and to this day I still wonder whether it was something I did or didn't do, should or shouldn't have done etc etc. My only suggestion in terms of medical treatment/guidance in the future is that you totally put everything on the line in terms of how you are feeling - I have done this with our OB. In fact, we weren't happy with our OB who managed us during our 2 m/c so we sought out the help of another one when I fell PG again and it was the best thing that we ever did. He has been very understanding of our feelings and more than happy to accommodate our needs, i.e. additional scans to reassure us, and answering each and every one of our questions openly and honestly. Sometimes you feel a bit silly and vulnerable for revealing how emotionally distressed you are, but I think the professionals really need to see this side of you in order to gain a real appreciation for your overall medical state IYKWIM?

I don't think what your DH said about taking the heparin sounds harsh - I think he can see that you are in a bit of a bind having receiving 2 different opinions, and that in the long run, you would probably feel better within yourself for taking the heparin? You are right in that you will have enough to worry about during a subsequent PG without adding your concerns about treatment etc to the list. Any subsequent PG is filled with anxiety and fear, I certainly won't lie to you about that. It is a very difficult time, and is one reason why there is a separate forum for those of us out there in that very boat. We all need support - be it on the TTC journey, or during PG itself.

It sounds to me like you have done some very special things to honour the memory of Katelyn. This is really important and I hope you are finding them helpful. I think I mentioned to you that we had written a letter as well as some poems, put together a keepsake box and bought a special plant. We also bought a special christmas decoration for both of our angels so that they are remembered and recognised as part of our family at every Christmas. These kind of things really made a difference to the way I felt - and it sounds like they are being really helpful to you too.

I'm really glad that you are finding this forum helpful too. It's just so reassuring to know that you're not on your own and that there are people out there who understand and care. It can feel pretty isolating when in real life, you don't know anyone who has been through what you have.