twin loss

[Reebekah]

Hi All

I'm new here. I lost my twin girls, Marissa & Gabriella, on 9/04/04 due to IC and/or PTL and/or PPROM and/or VERY incompetent doctors. Unfortunately, I lost my girls in a way that makes me feel a lot of guilt and anger. I'm so sorry to hear that others have went through similar situations -- but happy that we at least found each other and can hopefully help each other out. If you wouldn't mind sharing your story with me, I'd appreciate it. Comparing stories with others helps me to understand what happened so I'm prepared for the future. I have PCOS and am currently TTC.

Take care
Becky

[Juana Baby]

Becky - just wanted to say that I am so sorry for your loss. We lost multiples at 8 weeks a couple of years ago.

Hang in there! I am glad you are board!

laural

[SheriKCMO]

Becky,
This is far too common around here. I'm sorry that you have joined the sad mom gang. I wish none of us shared this history, but here we are. I delivered very suddenly at 23weeks 3days the day after Thanksgiving 14 months ago. It still hurts, as it always will, though things have gotten easier. I had no idea I was in labor and even thought that she could be saved at that age or that labor could be stopped. Unfortunately we were out of state for the holiday and nowhere near the proper help. Our Mary Catherine only lived for about 8 minutes after a lightening fast, virtually painless delivery.

Fortunately I already knew a doctor who handles a lot of patients with the risk of delivering prematurely, so we did a cerclage at 13 weeks for this next pregnancy, and I was on pelvic rest and reduced activity until my cerclage was removed at about 36.5 weeks. I had started to dilate a little bit from painless contractions. I am now at 38 weeks and will probably have my new baby soon. It has been quite challenging to continue grieving during the hormonal and emotional time that pregnancy can be, and I would recommend that someone hold off as long as they can to try again. I know as much as anyone, though, the urgent need to feel a child in those arms!!

It was also fortunate for me that I had started to ovulate on metformin and low carbing, so conception wasn't too much of a problem for us the second time around. I had a second loss, very early, though, and it was very disheartening. I was not emotionally prepared to deal with it and didn't even post on soulcysters for months! (impossible to believe now) I lost all hope, and then suddenly I was pregnant again and hormonally pulled out of that funk. This baby was conceived about six months after our delivery and has done extremely well. I hope the ttc process is smooth for you this time around.
Best Wishes,
Sheri

[GabrielsMom]

Becky,

I'm so so sorry that this happened to you as well. I lost my sweet boy Gabriel at 19w5d on 11/15. I lost my mucus plug the day before I went into labor, but my stupid OB blew it off as being something else! I was in the hospital on my back for a week, but my water broke completely anyway. I'm so sad whenever I hear that another one of our cysters has gone through this. It's absolutely heartbreaking.

As for us, we still have at least 3 more months before we'll try again. I know I'm not near ready yet, although part of me wants a baby RIGHT NOW. It's a horrible feeling. And I know the guilt. The guilt is so difficult to deal with. I hope that we all will eventually find peace that this wasn't our fault. I still feel deeply that I failed my son. It's hard to get over that.

I wish you the best of luck. Post here whenever you need a lift. These ladies are great!

[kwannabee]

Hi Reebecka...i just wanted to say i got your pm and i tried to respond but as usual it was too long and i had to chop it up alot to fit it in... hopefully it will make sense! Wishing you well and good for you for looking for answers...and as i said your little girls have such pretty names...i'm so sorry you had to go thorough this. Take care.

[VivC]

I'm sorry! It took us 8 years to get pregnant naturally. For some reason, I was freaked out about IC all through my pregnancy (no risk factors since PCOS isn't an "official" cause). My 19-week US was fine, although the tech did remark to me that Rivi seemed to be kicking directly into my cervix (but the report says everything was fine). That was on a Friday. On Monday, I started to notice increased discharge, went to the doc on Tuesday. He checked my cervix manually, said he didn't know what the discharge was, but it was probably nothing. A week and a half later I had major discharge, went back to see him, and he found bulging membranes. An incredible maternal-fetal/peri performed a rescue cerclage at exactly 22 weeks. At 24 weeks (the second I went off of Indocin), I went into labor and my water broke. They held off delivery for another 5 days, when I developed a major infection. Rivi was fine when he was born (they were all amazed, he was breathing, crying, PERFECT), but once the infection got into his lungs he went downhill very quickly. He lived 14 hours and 43 minutes.

I just fired my doctor because I STILL have a freaking infection, and he refused to do cultures/etc, just kept trying different antibiotics, none of which worked. Besides, next pregnancy I want a doc who knows what they're doing. The peri's office gave me a referral, and I have an appointment tomorrow to figure out what's going on with this infection.

DH and I aren't handling any of this very well (can't get into it since he comes on here to read my posts), so TTC is off the table for the time being.

[Reebekah]

More of the story...

When I was 16 weeks I told my doctor that I was feeling a lot of pressure and discharge and he said it was normal. I asked him to check my cervix to make sure I wasnt dilating, and he told me that he would check my cervical length at my 20 week u/s. I also asked him about cerclages, and he said he didnt think I needed to worry about that. I trusted him. Everything else was going good until I was 18 weeks. At 18 weeks I felt a little wetness and when the doctor did an exam she discovered I was 2-3 cm dilated with bulging membranes. I had an emergency McDonald cerclage and stayed in hospitalized tilted bed for 3 days. I was then released to home, and stayed on bed rest for 1 week. I THOUGHT we had saved my pregnancy. At my 1 week cerclage checkup, the doctor discovered my cerclage was not holding me closed and I was 2-3cm dilated again and a sac was bulging through the cerclage. I was sent to a high risk specialist hospital right away. They had to remove the cerclage because it was stretched to the max and would rip my cervix, cause hemorage, or cause major infection. When they removed the cerclage, I dilated to 4, and I was 80% effaced and contracting irregularly. There was nothing they could do to stop the dilating and bulging. They said a 2nd cerclage was not an option because PTL or infection was causing me to continue to dilate, and tilted bed wouldn't have done any good anymore. They also tested again for amniotic fluid and got both positive nitrazine and ferning tests. An amnio also revealed a leaking sac. They told me it was basically hopeless. At that point, they said there was no way my babies were viable at 19 weeks and there was no hope of reaching viability. They said that there was no way I could carry the pregnancy for 6-8 more weeks already being 4cm and bulging with a failed rescue cerclage. They were also convinced I was leaking fluid. They thought it was best to deliver because I was at very high risk of infection (sickness, possibility of becoming sterile, even death). They said I could go home and wait (I was insisting on waiting), but that going home would mean going into full labor and/or continuing to dilate and delivering my babies in an unsafe environment, or my water would completely break, or I would get a terrible infection. They made it seem like a no win situation. They said I couldnt just stay in the hospital and wait, because there was nothing they could do for me - contraction meds arent administered that early in pregnancy or for long periods of time, antibiotics cant be given for long periods of time and they cant get up inside the uterus, 2nd cerclage would tear me apart, etc. They basically said that trying to wait would only make a bad situation worse, and it would jeopardize my future fertility or maybe even my life for a less than 1% chance of reaching bare minimum viability. They said that even if I reached viability, there would be a lot wrong with them and they probably wouldn't live anyway. I really just dont understand why they couldnt DO SOMETHING for me?!

[livinbyf8]

I hope that you received my PM...

Reading this last post made me very sad as it reminded me of my own innocence and the trust that I placed so highly in my caregivers. Looking back my concerns were not heeded and my worst fears became a reality.

As it was explained to me by our peri, we had passed the point of no return...

Personally I believe that as long as you are carrying more than one baby, you should have a cerclage. My high risk clinic monitored me once every 3 weeks? and my cervix started showing signs of shortening yet they passed it off...

Oh how I wish the hands of time could be turned, and that I stuck up for myself and our babies more.....

But time does heal and I have accepted the cards that life has dealt us, I found courage in my faith and in my DH.

I hope and pray that you are able to make it through this, and the pain does ease...if you allow yourself to heal.

You and your girls are in my thoughts and prayers....

[Reebekah]

I'm SO SORRY to hear about the loss of everyone's children.

Viv- 8 years is a LONG time. I went to the doctor begging to help me get pregnant after only a year of infertility, so I can't imagine dealing with it for 8 years. It's so frustrating to think your life is going to be a certain way and then it ends up so very different. I'm so sorry that it didnt work out....but hopeful for your future.

Sheri - I was the same as you - I really thought that all pregnancy complications, including labor, could be stopped. I had no idea how serious it was to be in the situation I was in -- especially during the pre-viability stage. In fact, when I had my rescue cerclage, I thought I'd be able to go back to work in a few weeks. I was so naive. I had no idea that so many babies are lost to IC and PTL. Congrats on your newest pregnancy! I have also tried the diet thing - I've lost a ton of weight and hope it helps me ovulate on my own so I dont have to take the risk of multiples with Clomid. However, I've tried for 2 months with no luck -- if I'm not pregnant this next cycle, I think I might have to resort to meds (I can't afford IVF at this time). My new Peri will give me a cerclage at 12 weeks, no matter what.

Livinbyf8 - I have lost all faith in doctors, so I know just how you feel. I changed doctors immediately, and I also refuse to set foot in the high risk hospital where I was sent for "help". I know my original doctor would have caught my problem in time if he would have checked me when I complained in the first place. And then I know that the high risk OBs (and residents) could have done more than just talk me into delivering. At first, I was insisting that they do something - but they convinced me that there was nothing they could do. They said I had too many problems too early in pregnancy, and I just had too far to go. Then I was at least going to go home and wait for things to progress naturally and see how long it would take, but they scared me (and especially my husband, family, and Pastor) to death that I would ruin my life and future by trying to wait. I thought they had my best interests in mind. I thought they were right and there was no hope. I never knew of this happening to anyone else, so I didn't know any better. I thought they knew what they were talking about. You can't imagine how devastated I am now to find out that people in worse shape than I was in have had their pregnancies saved, or at least tried everything possible for as long as humanly possible. I have learned the hard way that doctors can be wrong, and that you simply can't rely on everything you are told...because ultimately it's your life and you have to deal with the decisions that you make for the rest of your life. If I had only known then what I know now....

[GabrielsMom]

Reebekah,

I was in a situation where I was 4-5 cm dilated with sac bulging. I was sent by ambulance to the hospital. I was flat on my back from the time I laid down in my doctor's office for another whole week. Much of that time, I was in the trendelinburg position. I was on turbutaline (breathine) to try to stop the contractions. None of this stopped me from dilating fully and having my water break. They couldn't do a cerclage either, because I was already too far gone. The whole time I was losing amniotic fluid, and this was confirmed by an ultrasound that showed that my baby had very little fluid in with him. I insisted on waiting it out in the hospital. They let me wait it out, but in retrospect, I wish I had ended it when he didn't have enough fluid and I was 10 cm dilated. I'm afraid that I just prolonged my baby's suffering. The whole time I was on IV antibiotics, but I still fear that I have an infection that they're missing. There's no messing around with being dilated with ruptured membranes. It is VERY easy to get infected.

I'm not trying to take your doctor's side. I'm just trying to point out that no matter what happened, you would always question it. It's our nature as mothers. Even parents who are far away from their children and couldn't possibly have anything to do with their deaths feel guilty. That's the funny thing about guilt. It doesn't have to be rational at all, but it can still torture us.

I think it is totally unfair that our doctors just seemed to blow us off. I had lost my mucus plug the day before I went into labor, but my doctor dismissed it, saying it was from intercourse the night before. What an idiot! If he had checked me THEN, I might still be pregnant, or at least my son might be alive now. But my doctor was TOO busy, in an office where they herd patients in and out all damn day. I am now going to a doctor who practices alone. And I'm pretty sure he wouldn't be so quick to dismiss me if something is wrong next time around. His office is a lot more calm. I hope you find a good doctor too. I should have realized the first time just how important it was.

Peace,
Adrianne

[Reebekah]

Adrianne,

Thanks so much for your response. Even after 5 months, I have so many issues that I'm dealing with -- any advice or input is more than welcomed.

You are right - I would probably feel guilty no matter what. I didn't want them to suffer. I guess I'm just bitter because every doctor/hospital does things SO differently and it doesn't make sense to me. For example, in your case they gave you terb and admitted you. At my hospital they refused to give me anything because "they don't just try things they know won't work". They told me I must agree to deliver or go home and wait -- but that infection could start at any second, I could finish dilating at any time, etc etc etc. I was 2 hours away from home. I almost felt forced to make a quick, rushed decision about something that I didn' t know much about -- which is not good to do to someone who is typcially a control freak :o) I really really didnt know what to do, so I asked everyone who was there with me. They all said they think I would be making a bad situation worse by trying to wait. That's where I went horribly wrong -- I listened to other people instead of doing what I felt most comfortable with doing. I really really needed to see for myself that it was an absolutely inevitable situation. I think another issue is that it was a larger city hospital and they didn't know me -- and I'm from a small town where I'm used to people knowing me and caring about me -- it was all so impersonal.

If you don't mind me asking......Did you get an infection from waiting? If so, was it because you were dilated/bulging, or was it because you were ruptured? How long did it take you to dilate from 5 to 10? How long were you dilated before you ruptured? Is there a huge difference between a rupture and a leak? I still had plenty of fluid left, but they were getting some positive tests for fluid (they also got some negatives too though). It was just a big mess. I guess I'm just worried that 1)they exaggerated my risk of infection and what the infection could do to me 2)they underestimated the amount of time I had left 3)they acted like I had a RUPTURE when in fact I only had a leak.

Thanks
Becky

By the way, anyone wishing to email can do so at Reebekah_99@yahoo.com

[GabrielsMom]

Becky, I hope that my answers will help you. After I posted my post, I worried about whether it would make you feel better or worse. I guess I just wanted to let you know that the outcome would most likely have been the same if they had admitted you. I have not heard of anyone in your situation or my situation having a good outcome. I suppose that if there was, it would have been a miracle. And those don't happen every day. Even those who made it to the point of viability still lost their babies due to infection from being dilated and/or ruptured for too long.

I'm not sure how long it took for me to go from 4-5 to fully dilated. The doctors didn't want to mess around inside too much. To tell you the truth, the whole thing is a big blur, and the more I think about it, the worse I feel. I keep having these questions "What if they had done this? what if they had done that?" It's pointless though. It won't bring my son back. Anyways, all I know is that on Tuesday Nov. 9th, I was 4-5 cm. By around Thursday, I had no cervix left. Nothing they did helped. By Friday, they gave me no hope. They sent in the perinatal bereavement coordinator who gave me the "talk." She indicated that they were going to break my water. I said "They aren't going to do that, are they?" Nobody said anything for a minute, and then she said "Well, I guess not." I guess they planned on doing it, but not without my permission.

I spent the weekend leaking a lot of fluid. I visited an MFM a few weeks ago, and he said that whenever you are dilated for too long, the sac gets weak and starts "weeping." It might not break, just slowly leak fluid because it is porous. And the longer you are dilated, the longer the sac is exposed to the harsh vaginal environment. That further weakens the sac and risks infection. I eventually ruptured completely on Monday. I had to push Gabriel out a few hours later because he was just sitting at the top of the birth canal.

As for infection, I must have been fighting something. I was on IV antibiotics, so that kept me from having a full blown uterine infection. But my temp was high and my white cell count was elevated. I'm sure that if I was on not IV antibiotics, I would have been VERY infected.

I didn't want a D&C, and asked them not to have to do it. But now, I worry that there's something left in there, that I'm going to get infected, that my fertility would be screwed up. Grief is fear. If my baby could die, then I'm not safe from anything.

[Gnzls924]

Your thoughts are so much like my own. Please know that you are not alone.

I lost my son at 20 weeks due to incompetent cervix. I went to the hospital (labor and delivery) because I was spotting. They did an exam and found that my bag was bulging. The week prior, I had experienced an increase of clear mucus coming from the vaginal area. Then I started to experience the feeling of constipation and lower back pain…probably contractions. This was my first baby and I had no clue. When I started spotting, I knew there was something wrong.

The doctors told me their course of action. IV antibiotics for the duration of my pregnancy, which would be spent in the hospital. They would have me lay down with my legs and feet elevated to see if gravity would work to push the bag back into the uterus. A rescue cerclage would be attempted. Unfortunately, I was on lovenox (a blood thinner) and any surgical procedure would have to wait at least 24 hours after my last dose. So a day and a half later I went into the OR. I was given a epidural and the procedure was attempted. They administered some meds to relax my uterus and the bag went back in. But unfortunately, there was nothing left of my cervix to sew together. I just knew before going into the procedure that it wouldn’t work. But I did it anyway because at least I know I tried everything.

My bag started leaking fluid the next morning. Throughout, the doctors and nurses stated that given the condition of my pregnancy, they sincerely doubt I would make it to 24 weeks. They were all very sympathetic. So I made the painful decision to proceed with my labor and deliver my son. I didn’t want him to suffer anymore. The guilt I feel now is immeasurable. When I delivered Matthew, he was just perfect in my eyes. I feel like a failure because my body was the problem. I feel like the failure of my body took his life away. I couldn’t hold my baby inside my body even with medical intervention. I felt that I wasn’t strong enough to do what needed to be done to prolong my pregnancy. All these thoughts still go through my head…it just brings tears to my eyes.

But everyday the pain, the longing, gets more bearable. I carry him always in my heart. I thank God that I have the women here on this website as support. I don’t know how I would have made it through to this point to write about it. Although it has been suggested that I go seek counseling, I find that through my words I am much more able to express what I feel inside…what is in my heart…especially in this forum. These are my thoughts, my feelings…thoughts I probably could never speak to anyone.

We are here for you….take care.

[GabrielsMom]

Diana, I understand totally what you are saying. You DID do everything you could for him. By the time you knew something was wrong, it was already too late. It seems like such a huge waste that our perfect babies died. It wasn't their fault, and so we feel like it was our fault because our bodies failed them. But I know that I would give everything I have and everything I am just to have him back. And I know that you would too. We didn't know that our bodies would fail. Who could have expected this? I was totally confident that I would carry to term. I knew IC existed but I was convinced it wouldn't happen to me... it couldn't happen to me. It was so unfathomable that even when I was headed to the doctor with contrax 4-5 minutes apart, I *knew* that I wasn't going to lose my baby. But I did anyway. To this day, I still can't believe it. And I wanted a son so badly. I've always wanted a son, and when he was born and I found out he was a boy, I was wailing.

Sorry, I'm having a really hard week.

[Gnzls924]

Adrianne,

I think we are in the same boat this week.

hang in there!

Diana