By Shannon, Orlando, FL USA
PROM at 20 weeks + 5 days. Delivery at 20 weeks + 6 days.
Story added: 2005-10-22

I was shocked to learn that I was pregnant 12 yrs after my first pregnancy, which resulted in a healthy daughter born at 38 wks, despite 1st trimester placental abruption & preterm labor at 33 & 36 wks. We'd tried to get pregnant again for years with no success. When we learned that even max doses of Clomid weren't making me ovulate, we finally decided to simply let it go with the thought that if God wanted us to have another, he'd make it happen. After all those years passed, we never thought it would happen. The doctor said it was probably brought on by Metformin, a drug I started taking 3 months earlier after being diagnosed with diabetes. Apparantly, they were just discovering that Metformin can increase fertility in some women, particulary those with PCOS, like me.

I knew from the beginning that there were going to be problems because of the difficulties I had in the first pregnancy along with the added complication of pre-existing diabetes. It started with my 8 wk sonogram, when they discovered that the baby was in the lowest possible position, right on top of my cervix. The doctor said as the placenta grew, it might move up the side and placed me on "pelvic" rest, but he didn't sound very optimistic. At 12 wks, the placenta had moved off my cervix, but the baby was still very low & I started getting a very ominous feeling. They had a lot of trouble finding the heartbeat at every visit & I just knew something was wrong. I couldn't explain why, but I started getting anxiety attacks & the doctor responded as if I were becoming psychotic or something because he didn't think anything was wrong. At 16 wks, he referred me to a perinatologist, but with an attitude that it was because I was a "difficult" patient rather than because of any problem. Even though we both knew I'd eventually go to a specialist because I was high-risk, he seemed annoyed to be sending me so early.

At 17 wks, I went to the hospital because I just didn't feel right. The foreboding feeling was constant & strong, I was already having stress incontinance & constipation problems even though I barely looked pregnant and I felt a lot of pressure & weight in the pelvic area all the time, like I was carrying a bowling ball. I had a lot of sharp pains which I know are generally normal due to ligament stretching, but they were so frequent and even when the sharpness subsided, the ache continued for hours afterward. When I'd complained to the OBGYN he told me to watch the weight gain (I'd only put on 7-8 lbs at this point, so it's not like I was packing them on unabashedly) & that being miserable was a good sign for the pregnancy, not a bad one. Believe it or not, for what is supposedly the best maternal-fetal hospital in the area (and the only one any perinatologist in the area is affiliated with), the OBGYN at the hospital actually told me to go home because everything was normal without ever verifying a heartbeat(after saying, "you women are so emotional, you need to relax"). They tried once with a doppler, but couldn't find it & never performed a sonogram or even tried again with the doppler. I was in tears as I left, but the appt with the perinatologist was coming up so I decided to discuss it with him.

I have a very high stress job & thought maybe that was part of the problem, so I talked the doctor into taking me off work in the hopes that a reduction in stress level might help control the anxiety attacks & stablize my blood sugars. It's not that they were uncontrolled because my average was perfect, but I had a lot of highs & lows. I'm not even going to go into the problems I had with the disability insurance company over this. Let's just say they made sure my stress level wasn't reduced and I'm not so sure they adhered to ethical procedures in the way it was handled.

I had my consultation with the perinatologist & discovered that I had a fibroid that was growing along with the baby. The sonogram (almost 18 wks) looked good & he tried to give me a 3D picture, but the fibroid was right in front of the baby & all I could see was a face and an arm. He couldn't confirm the sex of the baby because of the fibroid. I felt it was a boy, which was particularly special to us because there are no sons in this generation on my husband's side of the family. He completed the disability papers (as did the OBGYN) and also put me on Wellbutrin to help calm my nerves. It's not actually for anxiety attacks, but he said the medications that are really shouldn't be taken in pregancy if they can be avoided so we'd see if the Wellbutrin might help stablize me.

I watched all the pregnancy & birth shows (Birth Day, A Baby Story, etc.) on cable & not once did I ever see anything about PPROM. I never even considered it because I didn't think it was possible for the water to break before getting close to term. According to the information I was getting, the age of viability is 20 wks. The day after I passed that mark, I mentioned to my husband that I was feeling much better because now at least if anything were to happen the baby would have a chance. A few days later as I was sitting on the toilet one morning, straining from constipation as normal, I suddenly heard & felt a "pop" followed by a huge gush of water. It was so shocking, I jumped to my feet. I instantly knew what had happened, but I just couldn't believe it & I thought I was imagining things. As I got dressed, much smaller gushes continued so I knew it was true. My husband was at work & I was alone. I called the doctor's office & they told me to go to the hospital. In hindsight, I should have lied down & called my husband home to take me, but my mind was racing & I was just thinking about getting there as soon as possible, so I drove myself & called my husband on the way.

There were about 4 other pregnant women in triage when I got there, 1 of them also with PROM between 20-21 wks & the others at or near term, complaining of contractions. First I thought it was an awful coincidence that the same thing was happening to someone else at the same time because I thought this was extremely rare. Next I thought it was really odd that they were taking the term pregnancies in first. That was the first sign about what was to come, though I didn't recognize it then.

The other PPROM was talking to the people around her as we waited, saying that she hoped they'd go ahead & deliver her baby right away because last time this happened to her, she had to stay in the hospital on bedrest forever & that was awful. She was very calm about the whole thing, which fed my hopes that they'd probably be able to save the pregnancy. Still, I was so scared that I wasn't talking to anybody. My heart was racing and the wait time, which ended up being almost an hour, was agonizing. My husband (and Mom, since he called her) didn't get there until I had finally been brought into an exam room. I was the last one called.

They took hours trying to verify that my water truly had broken through the standard methods because I had so little water left they couldn't get a sample. Finally, the nurse said we both knew it was true so we'd just go ahead & proceed as if it were confirmed. She strapped on a fetal monitor for less than a minute before I recognized a deep dip & made the mistake of telling her I saw it, at which point she immediately took the monitor off, saying that it wasn't getting a good reading. I knew better, but I also knew that she was doing it to try to keep me calm. I figured that since they were sure to be done with the assessment soon, admit me & put it back on, I'd let it go for the moment. I was so wrong.

They did a sonogram & wouldn't let me see the screen. After asking several times, the doctor finally told me that there was no water at all so he couldn't see much of anything so there was nothing for me to see & nothing he could tell me. When I reviewed my medical records weeks later, I saw that the sonogram report included all the normal size measurements, and AFI of 1.8 (ok, not much, but not "none at all") & confirmed the heartbeat. After the sonogram, the doctor left to go discuss the case with the chief perinatologist on staff before he could discuss it with me.

When the doctor returned, he began to tell me that I should allow them to induce labor to terminate the pregnancy because there was virtually no chance that the baby would survive. I told him I wanted this baby, that I came to the hospital to be admitted & I expected they would put me on antibiotics to prevent infection while we try to delay birth as long as possible. He simply said "No." I was speechless for a moment, then asked why not? He told me they consider the age of viability to be 24 wks & nobody is admitted until they reach that point, so if I wouldn't agree to induce labor I could just go home. Honestly, he really was that blunt. I told him I wasn't leaving & I wasn't agreeing to induce. He responded by saying there was no way they would admit me & I could come back when I went into labor spontaneously, probably within 24 hrs (which they won't try to stop), when I developed an infection (very likely), or when I reached 24 wks if I was lucky enough to beat the odds & make it that far, whichever is first. I started bargaining - isn't there anything at all that can be done? no. What about something like that procedure I saw for meconium problms during labor, the amnioinfusion, can't you add water like that somehow? no. After hitting the brick wall over & over again, I finally sent him out saying that I needed to think about it, then called the nurse in & told her I didn't want him to come back in the room, period, & she needed to call my perinatologist and bring him in to see me. I asked the nurse about the other PPROM that had been hospitalized & was told that her prior PPROM was after 24 wks but this time she was going through the exact same thing that I was.

When my perinatologist arrived, he was much more tactful & understanding, but he wouldn't offer anything helpful either. He gave me the statistics, saying that the baby was extremely unlikely to survive no matter what and even if by divine miracle it did, it would almost certainly have severe problems like cerebral palsy. He said the lungs would not continue to develop if there was no fluid to fill them. What I learned later that he didn't tell me that the fluid is produced by the baby urinating & if I drank tons of water & stayed in bed, I might help it accumulate. By that time it had been several hours & I didn't even know if the baby was still alive. I had visions of him being squeezed tightly, maybe even crushed, by my uterus & my mom thought it had probably already cut off his air supply by compressing the cord. The doctors had already considered this to be a hopeless situation & weren't monitoring the baby in any way. The doctors mentioned risk to my own life from infection & hemorrage and though I wasn't listening to any of that, my mom & my husband were. The doctors must have talked to them separately too because when I insisted to my husband that there had to be a way to repair the rip in my membranes, he said it wasn't just a little hole, there was a huge flap torn away. He didn't want to risk my life in any way at all & he didn't want to take the chance that the baby might be severely disabled if it did survive because one of his friends has a daughter with cerebral palsy & he said he couldn't handle that. My mom kept saying that I couldn't risk my life because I already had a daughter that needed me.

I eventually agreed to the induction and it was the worst experience in my entire life. About a year later our house caught fire & burned all the way to the ground in nothing more than a pile of ashes. We lost everything but our lives (and miraculously, our son's urn because it survived without a crack or even a any singe marks on the felt bottom even though the entire entertainment center fell on top of it & continued burning during the fire). We even lost 2 cats and a dog because of that fire, but all of it pales in comparison to the experience of losing our son. In fact, I've never even shed a single tear due to the fire because I felt like I've been through so much worse. After the fire, loads of people offered support, many more than we imagined & extremely generously. Nobody was there after the loss of our baby. Even my mom & to some degree, my husband, didn't understand what I was going through. Those few that tried to be supportive rather than avoiding didn't know how or what to say. I didn't know what to ask for or how to ask. There are support groups, but I couldn't motivate myself to get out & go meet a bunch of strangers, particularly during the most severe stages of depression. For anyone who is considering undergoing this procedure, please consider what it actually entails before making the choice. I didn't know what I was in for. I can't say that I made the wrong choice because I don't know what would've happened otherwise. I just know that it was too awful to ever go through it again, particularly since the fact that it happened as a result of my choice still haunts me.

First, after I finally agreed to the induction, I asked for something to calm my nerves, but they wouldn't give me anything until after all the paperwork was signed. That made sense, but I didn't know it wasn't going to happen until 4 hours later even though my blood pressure was through the roof by then because they have to get all kinds of sign-offs from the right people since it's technically a late- term abortion. I thought they were going to take me to labor & delivery, but they don't. You go to the maternal unit instead, where you get a regular room with a regular bed & are left on your own to deliver there
when the time comes. The nurses told me that in most cases, that happens alone & in the bathroom. They do check on you, but not very often. At the hospital I was in, the elevator door to the maternal unit opens facing a bulletin board full of healthy newborn baby pictures. I had just managed to compose myself when I saw that & started bawling again. From the start of my admission in that unit, the staff handled it as what it truly was, an abortion. The experience is painful enough, but when all you care about is the baby & you come from a unit where they do focus on the baby at least to some degree to another where you alone are the patient & they could care less about what you care for most - it's really difficult. For those of us in this situation, every detail is a heartwrenching reminder that the hospital no longer has any consideration for the baby whatsover. They really don't even consider it a baby anymore, just something your body needs to be rid of. It was so different from the way I saw it - an unavoidable preterm birth from which my much-loved baby was unfortunately too small to survive. The nurse was smiling & cheerful when she said no anesthesia would be used, but I could have all the demerol I wanted because it didn't matter for the baby. At that point, was was still convinced that the baby would be born live & die shortly afterwards because he couldn't breathe and I was horrified that both she & the doctor would talk to me like that when all I wanted was to protect the baby and delay his death as long as possible - and how could she be so cheerful about it? Was I supposed to respond with a smile? My mother had to pull the doctor out of the room & tell him off. They gave me a different nurse after that & it got better because she was sympathetic. I wish they would have told me why they knew he was going to be stillborn because it might have made a big impact on my decision. The drug of choice for this procedure, Misoprostal, is so strong that at this stage of development, it kills the baby in utero so you have no chance of holding it alive (which some doctors think is best for the mom - nice to see that they can make that decision for us) and it also means that the life insurance company denies any benefits because it wasn't a live birth, so you get nothing with which to have a funeral or burial for the baby.

From what I've read, the Mistoprostal is supposed to be placed on the cervix. I'm certain that the doctor placed it INSIDE my cervix because it took him a long time with quite a bit of apparant difficulty & it was extremely painful. There are lawsuits pending regarding this drug because the contractions are so strong uterine rupture is a very real risk & has happened in many cases. Doctors like it because it's cheap & it's fast. They told me they'd wait 4 hours after my first dose, then consider a 2nd if needed. I went from 0 centimeters to 10 centimeters in 3.5 hours with no pain drugs at all (because I wanted to be as alert as possible for the birth). I pushed a couple times but the nurse said the baby was high & she didn't want to make me work that hard, so we'd just let him come down naturally. I went ahead & got a demerol shot at that point. After that, I remember getting up to pee a little while later & feeling as if something were going to come out when I sat down, so I went back to the bed & called the nurse. She came in time to deliver my son (which is the first moment his sex was confirmed) so I guess I was one of the lucky ones. I have a dream-like memory of sitting up to see the nurse holding him up between my legs & that's it. He was born 1/10/04 at about 2:30am. My husband says that after the first shot of demerol, he called the nurse in for another every time I whimpered at all because he couldn't stand to see me hurting like that so I got a total of 6 shots during the 2 hrs that it took to deliver him from the time I was fully dilated. He also confirms my memory of the birth, saying that after I saw the baby, I fainted. He tells me that the nurse showed him the baby, saying, "see, he's stillborn" but he saw the baby move a little at first. My son weighed 11.4 ounces at birth & was 10.5 inches long. His feet were a little more than an inch long. He was perfectly formed, but thin & dark red because his skin wasn't fully developed yet. He had a lot of bruising & some swelling, particularly on the right side of his face. The nurse said that was from being "beat up" coming down the birth canal due to his size. My husband said the Misoprostal still hadn't completely dissolved yet & was stuck to his head when he delivered. Once I woke up, I went to the bathroom & passed the placenta. I guess they don't feel any need to stay with the patient through this process. They just ask you if it's happened yet & if the bleeding doesn't slow down after a certain time period, they do a sonogram to make sure nothing's wrong. They brought my son in, dressed in a little robe & hat, wrapped in a little blanket. I held him for awhile & fussed with him a little, but his skin was so delicate that the slightest touch seemed to rub it off. His features looked just like my daughter's. I called my parents & the clergy in for a prayer, then wanted nothing more than to go home as soon as possible. We called a local, family-owned funeral home & they offered to cremate him for us at no charge. They also sold us an urn that looks like a ceraminc cherub at a substantially reduced price.

I called the disability insurance company & told them they didn't have to worry about my claim anymore because of what happened. That's when they said they would go ahead & approve it retroactively. How thoughtful. They also gave me a full 6 wk maternity leave though, since it was a delivery (>20wks), and that was better than I'd expected. I cried non- stop, 24 hrs a day for two solid weeks & at that point, my doctor put me on Xanax and antidepressants. It helped me stop crying so much and I stopped taking them after a few weeks. I had it out with the OBGYN (who sent me to this hospital & wouldn't help me convince them to admit me) at my 6 wk check up. He said something that made me come to terms with his involvement though, when he told me that I'm very lucky that they're getting pretty good at saving high-risk mothers these days, but they can't always save the babies too. He explained that he'd had a patient hemorrage & die on the table once. I still don't agree with him in my case, but at least I understand where he's coming from & why he holds that opinion. I'm still angry with the hospital staff, for the way they treated me, their refusal to give me any information about the condition of my own baby vs. general statistics, their failure to tell me that they weren't just inducing labor to allow the baby to die naturally but actually killing him themselves, and for not telling me that there's a perinatologist at another hospital less than 2 hrs away that performs amniopatches and I could have gone there when they refused to admit me. I talked to a few lawyers, but none of them would touch a case involving a baby less than 28 wks gestation, maybe because you can't prove the baby would've survived otherwise, maybe because of the great abortion debate, maybe a little of both. Nobody ever gave me a reason why this happened. They just don't know. I took my hospital records to the perinatologist & all he could find that was abnormal was evidence of some fibrosis (scar tissue) in the membranes on pathology, but even some degree of that is normal. There was no evidence of any infections. I felt a little silly asking if it might have had something to do with straining from constipation, but I had to ask since that's when it happened and he confirmed that would have absolutely nothing to do with it. The perinatologist is the one who told me the Misoprostal is what caused my son to be stillborn, without a doubt. He also said I have a 30% chance of PPROM in the future, though when I asked why that would be if there's no particular reason it happened in the first place, the only answer he had was that since it happened once, my body's shown a propensity for it. That doesn't make any sense to me.

I still blame myself (for having an abortion regardless of the circumstances, and for not looking into my options before I went to the hospital even though I thought it was an emergency so there wouldn't be time) and my husband (for talking me into the termination) to some degree, but it's getting easier with time. One of the things that helped me most was getting a bereavement doll, made to the specifications of the baby's birth measurements & weight. My mom thought it was creepy, but she didn't understand it wasn't about carrying a "baby" around as a substitute & therefore not letting go, but it was about finally being able to let go because it calmed my greatest fear, that of forgetting him. I admit I slept with the doll twice, during particularly painful & depressing moments, but other than that the doll was wrapped in my son's receiving blanket & stashed away in a cabinet stocked full of other memorabilia. Like I said, it was all about making sure he wouldn't be forgotten. The hospital gives you pictures, footprints, the clothes & the bracelet, but it's not the same and somehow having a reminder of the baby's size was extremely helpful. I guess it's because I hardly had a chance to feel pregnant before he was born & a doll of the same size confirmed to me that he was a real baby.

We started trying to get pregnant again immediately. I know you're not supposed to, but my chances are so low anyway I couldn't help myself. We wound up with a fertility specialist again after 8 months. Clomid didn't work, again. We got to Repronex & Femara (similar to Clomid) and I had two really good follicles in the first round. My appt for the pregnancy test was 1/26 at 8am. I just couldn't wait that long & took a home pregnancy test the day before. It was positive and I was really excited. Unfortunately, I missed the doctor's appt because the house fire that I mentioned above happened at 6am on 1/26. I started bleeding a couple hours later and a few hours after that, I passed two tiny, similarly sized pale pink bits of tissue. We decided to wait until our housing situation stablized before continuing any further. Today, 9 months later, we've moved to TN & are almost ready to find another RE. We plan to ask him skip the preliminaries & go straight to another Repronex cycle and hopefully that'll result in at least one more healthy baby. This time I'll be making sure to ask the OBGYN & perinatologist about their philosophies regarding management of problems in that critical 20-24 wk period before I select one because I know now that what happened to me is not necessarily standard practice for all medical providers.