ROM: Rupture of membranes, also known as 'breaking the bag of waters'.
PROM: Premature rupture of membranes, ROM prior to the onset of labour but after 37 weeks gestation.
pPROM: Preterm premature rupture of membranes, ROM at any point prior to 37 weeks gestation.
Emily's definitions:
pPROM??!!!: My worst nightmare.
The definition of pPROM doesn't really capture the possible outcomes very well. Your odds of bringing home a healthy baby depend very much on a host of factors and possibly a little bit of luck. For example: a woman whose amniotic sac ruptures at 36 weeks + 5 days gestation is considered to have pPROM. So does a woman whose water breaks at 17 weeks. The odds of the first woman bringing home her baby are very good. The odds of the second women? "Almost zero", according to my OB. Unfortunately I was that second woman. Not once, but twice. Rupturing with my first baby at 14 weeks and the second at 17 weeks. The first baby died, and the second survived.
I don't know why the odds were in my favour the second time. I know the 15 weeks + 2 days that I maintained my pregnant status after rupturing on March 24th 2011 were the hardest days of my life. Initially I considered giving up and going with the termination offered. I had done the bed rest, the hoping, and the waiting, just one year prior, and it ended with a scary ride to the hospital in the middle of the night and dead baby. Aidan was born at just 1 lb 4oz and died 54 minutes later in his daddy's arms. I felt panicky and despondent when I considered doing it again.
So what stopped me from terminating? It wasn't an objection to termination on moral or religious grounds. We just really wanted a baby. More than anything. After my second pPROM my doctor didn't feel confident that he could offer me anything to prevent it from happening for a third time. So, I could terminate, only to face the same decision at some point down the line. That sealed it for me. There was no choice at that point, but to see it through. I had done it for Aidan (albeit somewhat unknowingly since I didn't realize I had ruptured until many weeks later), so I couldn't abandon the second.
Today is the one year anniversary of my first full day on bed rest with Kaia, my second pPROM baby. It is a day I don't even remember clearly, it was such a black hole. My husband and I could barely move the despair was so heavy. But, one can not stay in that state indefinitely. Even despair gets boring. So I started Googling. And if there is one thing I'm good at, it's Googling. I found the pPROM board on babycenter and personal blogs of women who had beaten the odds and delivered healthy pPROM babies. I found medical journal articles detailing some positive outcomes with early pPROM. I tried to find research that would explain my personal cause of pPROM (a poorly developed placenta called a Breus mole). Over the next few weeks I spent many hours on my computer. But that was fine, it wasn't like I was going anywhere.
In honour of my one year rupture date, I wanted to write down what I did during my time on bed rest that I felt contributed to my overall health and well being and may (MAY) have contributed to Kaia's survival. If you are finding this blog because you or someone you love has early pPROM, I'm sorry. It is not an easy road. Know, however, that some babies do survive. Some do thrive. Not always, but sometimes. I don't know if you will be one of them, but I hope so. As one of the books that served as a good distraction during my weeks on bed rest would say: "May the odds be ever in your favour".
-I drank 4-5L of water a day, plus other beverages. My doctors were not the ones to tell me to do this. Increasing fluid intake does seem to be the starting point for those with pPROM, so I tried to back it up with research I did on my own. I found one study which showed a small transient increase in amniotic fluid production after the pregnant women drank a lot. Not much to go on, but better than nothing. Make sure however, that you are getting enough nutrients if you are drinking a lot. Water and juices shouldn't replace actual food, since you need to be getting good nutrition. Also, make sure your doctor is aware of your increased fluid intake. If you have any health issues such as high blood pressure, heart defects, kidney issues, or diabetes you might want to make sure a large increase in fluid intake isn't going to be a problem.
-I took extra Vitamin C, Vitamin D, Colace (a stool softener), Fish Oil caplets (Omega-3), Collagen powder (Types 1&3), Calcium, Acidophilis tablets and Prenatal Vitamins. The only one which I came up with on my own (the others I got heard about from women on the babycenter pPROM board) was the Collagen powder. I read an article saying that women who have pPROM were shown to have lower reserves of a certain type of collagen in their bodies (Types 1 and 3), so I decided to add it. I ordered it online and it came in a powdered form. I added it to orange juice daily (it's absorbed and works best with Vitamin C). I have NO idea if it did anything (other than make my skin, hair and nails look somewhat nicer), but I figured it couldn't hurt. If nothing else it was a little added shot of protein for Kaia.
-Stretch! If you can, set up a daily exercise 'routine' for yourself and continue to use your body as much as you can. If you don't want to chance getting out of bed at least lift small weights with your arms, do foot flexes, ankles rolls, neck stretches etc. I did some stretching daily, usually on the floor, mainly because my body hurt a lot from inactivity. I would do Yoga positions that were somewhat 'inversions' to avoid leaking, like downward dog or cat stretch. I don't know if this is recommended or not, but I needed to do it for my physical well being. I wish I could have had a physiotherapist come in and monitor my progress, just to keep me on track and provide some support. It may have saved me from a bad back when I finally got off bed rest.
-I used antibacterial wipes after bowel movements only. I didn't want to over use them as I was peeing so much and didn't want to cause skin irritation.
-Wash your hands (or use hand sanitizer) before and after going to the washroom. I set up my hand sanitizer on a table that I went by on my way to the bathroom. That way I had clean hands for doing any personal care and clean hands when I went back to bed.
-Change your pad often to avoid bacterial overgrowth. I probably changed it every other time I went to the washroom.
-I had people who lived with me be very careful of being clean, especially in common areas. I had them wipe down the bathroom daily with cleaner and made sure they washed their hands before preparing my food. It can't hurt and it might help!
-Ensure that someone is available for you 24 hours a day in case you need them. They don't have to be with you, if that's not possible, but make sure someone could come to your aid within a short period of time. I say this because I delivered Aidan, my first pPROM baby, within 5 hours of feeling what I would describe as a 'sore back'. The pain got bad incredibly quick and it was one of the scariest 5 hours of my life. I was starting to get an infection which is why my labour went so fast. My body knew that it had to deliver in order to keep me healthy. If you are still at home on bed rest and are alone for any period of time, make sure someone is available in case you need them. Also, if you are home alone on bed rest and you aren't feeling well DO NOT WAIT to 'see if things get better'. Go to the hospital, or call an ambulance. An infection could be very serious. You can always come home again if things settle down.
-It is very hard being pregnant with such poor/uncertain outcome. All the joy is gone, and fear and anxiety and stress are left in it's wake. Let yourself feel sad, frustrated, angry, numb or depressed if you need to. My "community boards" on babycenter that I visited a lot while pregnant were: pPROM Support Group, 2nd/3rd Trimester Loss Support and Carrying a Pregnancy Despite Poor or Fatal Prenatal Diagnosis. Not a lot of happy mommy's there I can assure you, but a helpful group if you're feeling down and want some support.
-After my pPROM with Kaia, I began to prepare for her death. I was 17 weeks pregnant and had very little hope that she would be okay. Since I had been pregnant with Aidan and lived through the death of one baby, I knew better how to prepare. I looked into funeral homes while I was still pregnant. I did not like the one we used for Aidan and found another place that I was happy with (note: some places will not charge you, or only charge a small fee for collection of a body of a baby, so ask). While this may seem incredibly morbid, it helped me to feel like if the 'worst' happened, I would be better prepared. We are so grateful it didn't come to this a second time.
-I had a bag packed and ready to take to the hospital very soon after finding out I ruptured, knowing I could deliver at any time. Along with clothes/toiletries I might need, my husband went out and bought a special blanket, and a small toy for the baby. These blankies work very well as they are small and soft and are the perfect thing to cuddle a very small baby in. We learned with Aidan that no matter what happened, we would want all the physical reminders we could have with baby # 2. If your baby dies, or is very sick with an uncertain outcome, a blanket or toy that belongs to him or her that you picked out can take on huge significance.
-In the bag that you take to the hospital, have comfortable and practical things packed for your partner too. He (or she) likely won't want to leave your side to go home and get things like underwear, socks, a toothbrush, or any medications he (or she) needs.
-Bring a camera. Make sure the batteries are charged and a memory card (or film) is in the camera. Have it with you at delivery if possible, even if the worst is happening. The most perfect picture I have of my son (the header on this blog) was taken shortly after he died while he still looked somewhat 'alive'. I wish we had taken a photo as soon as he was handed to us, while he was still alive. The only 'living' photos we have of him are ultrasound photos and with pPROM those photos are often blurry and indistinct due to lack of fluid. Even if your baby dies prior to birth, he or she will still 'look' the best right after delivery. Taking photos of a child who has died may not be for everyone, but I can say it definitely helped me. I wish I had more.
-People were always suggesting things for me to 'do' while on bed rest. I don't know how many times people told me I should knit, scrapbook, draw, organize my computer files, learn a new language, etc etc. All things you can do while stationary surely, however I just didn't have the energy or focus. I was so worried about what was going on with my body and the baby that I didn't have it in me to do much else. If this is you, don't feel bad about this. pPROM is incredibly scary and taxing both physically and emotionally. If you can distract yourself with a project, great. If not, don't worry about it. I read a bit and watched a lot of TV. Both times on bed rest I watched the "Buffy the Vampire" and "Angel" series. They are my favourite, and don't talk much about babies so it helped 'remove' me from what was actually happening in my life. I also watched a lot of HGTV (Home and Garden TV). It was nice to ogle or criticize something so mundane as home improvements and that channel barely ever mentions babies. A nice change from TLC that plays non-stop "Bringing Home Baby".
-Friends and family will likely not understand the gravity of the situation and may think that 'since you're still pregnant everything is going to be okay'. People don't know a lot about early pPROM or the stresses you may be facing. In order to keep friends and family updated from my bed during Kaia's pregnancy, I wrote an "Update" e-mail every couple of weeks briefly explaining what was going on, what my next goals were and how people could support me (I suggested people make a frozen or easy to prepare meal for us if they could, or contribute to our 'parking' fund, as parking at the hospital was VERY expensive). I didn't do this during Aidan's pregnancy and I regretted it afterwards as no one really knew what had happened and some people did not even know that I had been pregnant when they learned he had died.
-My doctors were very negative during Aidan's pregnancy and during Kaia's I didn't hear anything very hopeful from them until after 27 weeks (ie: after being ruptured for 10 weeks). While this is VERY hard to hear, recognize that your doctor likely doesn't want to 'get your hopes up' because while a good outcome might be possible, pPROM prior to viability historically doesn't have a great success rate. Doctors have to give you information based on medical studies and their own practice experience and probably both tells them that early pPROM has a high fetal mortality rate. It's also a very powerless position for them to be in. Doctors are trained to DO for their patients, and with pPROM there is very little to do. It's mainly a wait and see. So recognize this and accept that you will likely have to be your own cheerleader.
-I explain it best in this post, but after rupturing with Kaia, I felt very despondent. I did not really believe I was going to have a good outcome. I emotionally felt I had more in common with women who chose to carry a fetus they knew had a poor or fatal diagnosis. While people on the pPROM board often talk about hope, I didn't want to have any. I spent my pregnancy with Kaia loving her, not expecting her to grow to be anything more.
-Work is another stress that I had to deal with. As I live in Canada I was on EI (Employment Insurance) for the entire time I was on bed rest for both pregnancies. This means I was still receiving an income while I was off work (albeit much reduced). Look into whatever is available in your area. If you don't know, look online, ask your occupational health or human resources department at work or ask to talk to a social worker who works with your doctor. Social workers are the best people to help you with financial concerns when you are off work due to medical reasons. Your doctor should be accommodating and write you a medical leave of absence note. Make sure you keep on top of whatever paper work is necessary to ensure you continue receiving your payments. In Canada you have to report (online) to EI every 2 weeks to state that you are still on medical leave and after 10 weeks of being off you are required to hand in a medical note (someone can do this for you). EI also only lasts for 15 weeks.
-Keep your employer in the loop, but don't feel you need to go into great detail. If your employer knew you were pregnant you can just state that you are having problems with the pregnancy and your physician feels it best you remain on bed rest. You can go into more detail if you wish, but it's not necessary. By law, they cannot ask about your medical history or your medical records. Those are private. Be careful of confiding medical details to work friends unless you are okay with those details being shared at your work place.
-Your partner is probably under a great deal of strain as well. pPROM was incredibly difficult for my husband to deal with. He was very worried about me, about the baby, about our finances and about having to cope with all the housework and chores by himself. On top of that he couldn't sit around and mope like I could because he still had to work. What helped us was making sure we spent as much time as we could relaxing together. We also relied a lot on family to make meals, help us with chores and do some shopping. This is definitely a time where it's okay to ask for help. It's also a time when your house doesn't have to be spotless and the meals don't have to be world class. As long as everyone is safe and staying sane, that's the most important thing.
The hardest thing about pPROM is that it is a waiting game and your ability to stay pregnant, retain fluid, and continue growing a healthy baby depends on so many things that are out of your control. It is a very hard and powerless position to be in. I hope that someone stumbling upon this blog who is experiencing the same thing, or who knows someone who is, will find these suggestions useful.
