pProm at 16 weeks

[dv49]

Hello all. Well, this is my story---

I am currently 20 weeks and 3 days pregnant. My membrane ruptured at 16 weeks and 4 days. I was told I'm going through what is called "pProm".

I found out at 18 weeks that I had pProm....... I've had 3 fluid checks since; 18, 19, and 20 weeks.......... I have continued to leak fluid and there has been very little (1 cm) to no fluid at each check. My doctor is wonderful and I believe he's being very honest about the outcomes and it doesn't look good.

Apparently the huge problem is- the baby's lungs develop the most between 16 weeks and 20 weeks... which, is the period that I have not had any fluids. Since I found out at 18 weeks... I have been on strict bed rest.

What I'd like to know is if anyone else has or had a similar situation that had a positive outcome... Is it possible for this baby to have the lungs develop enough to live?????

I've read a ton of stories when this happens at 20+ weeks with positive outcomes.... but I really need stories where pProm occured at 16 weeks and you have continued to leak and the baby had little to no fluid surrounding it.

Thank you in advance for you stories... and my heart goes out to anyone who has had to go through this- it's the hardest thing I've ever had to go through.....

 

[clairec81]

Hi there. Just read your post and it gave me flash backs to my own pregnancy. I had bleeds at 7, 8 and 11 weeks and they discovered i had a blood clot near my placenta. At this point nobody really knew what was going to happen as it was very early but the pregnancy continued. At 19 weeks we went for a private scan as my husband works off-shore and was going to be away for my routine 20 week scan. At the private scan the sonographer told us that there was a lack of fluid and told us to go straight to the hospital - she even called ahead to say we were coming so i knew something was wrong! At the hospital i was re-scanned and my husband and i were taking into a little room and told that i had extremely low fluid and that the babies lungs would not develop and was offered a termination. On the way home in the car i kept saying to my husband that i didn't want a termination and couldn't understand why they wouldn't do anything. Anyway we were told to come back to see a consultant a few days later and like your doctor he was brilliant - very honest but very compassionate. He scanned me and said he was sure the baby had potters syndrome (no kidneys) which would explain lack of fluid as fluid made up of babies urine in 2nd trimester but unfortunately would mean the baby would have no chance of surviving. He arranged for me to see a professor of fetal medicine at York Hill the following week and arranged for me to come in for a termination the day after that - so he was pretty sure! We went to see the professor- i cannot tell you how it felt sitting in the waiting room but it was like waiting for a death sentence! We were scanned again and at this point the professor asked if things looked different to us - we said 'no' as we had no clue what to look for but the short story is that he said the baby had kidneys and yes there was low fluid but 'enough' for lung development. We left feeling confused, happy and so many other emotions and retuned for weekly scans with our consultant. The professor said his fear would be PROM and sure enough at 24 weeks my waters broke. I was admitted to hospital and we were told the worst case scenario of delivering a baby at 24 weeks and i received steroids. The doctors kept saying if you can hang on until the second set of steroids- if you can hang on another 24 hours - if you can hang on 1 more week it'll make the difference. Anyway i managed to hang on 8 and a half weeks to 33 weeks! However at 30 weeks on one of my weekly scans my doctor was taking the usual measurements when he finished and explained that the lungs were measuring very small and the baby had pulmonary hypoplasia - underdeveloped lungs. He was absolutely sure that the baby would either not survive delivery or would die shortly after birth. I was devastated - to get this far seemed so unfair. Again everything i was told i decided not to give up hope - i had come this far and could feel my baby moving inside me -i owed it to the baby to keep hoping. My doctor told me to hope for the best but prepare for the worst. I was booked in for a section on the 12th of January (doc felt a section was the babies best chance) but on Christmas Eve i began to have contractions and after heading to hospital at 6pm had an emergency section and my daughter Erin was born at half 7. As i began to come round from the anaesthetic my husband told me we had a little girl and she was in the NICU. I got to see her the early hours of Christmas Day and she was beautiful. That night i kept waiting for them to come and tell me the worst but they didn't and when my husband went to see her in the morning she was off the ventilator and breathing on her own! She spent 6 weeks in the NICU before getting home on the 5th of February and during those 6 weeks breathing issues were never a problem!
I don't want to give you false hope and i know our situations are different but i do think that where there's life there's hope! It's good to hear your doctor is good and remember to talk about how your feeling -it helped for me. I'll be thinking about you and praying for you. Stay strong and keep me posted!

 

[Foogirl]

I didn't have this problem but I didn't want you to think we were all ignoring you!

I'm no expert, but does the lack of fluid actually affect the development of the baby? I understood it was there for protection rather than providing any kind of development or nutrition. Seems I've learned something new!

Have you been given steroid jabs which help lung development? It may be that they are only given after 23 weeks as they are usually given when there is a risk of an imminent birth.

I would advise staying off google! You will find that loads and loads of people want to tell their sad stories. For some reason people seem more reluctant to tell their good ones.

Fingers crossed this all works out fine for you. Let us know how you get on. And try not to worry too much.

 

[AP]

i seen a story very much like yours, I will need to find it, I'l be back!

 

[dv49]

Foogirl: Yes, the amniotic fluid is very important. The baby's lungs won't develop without it. That is why the outlook is so bad.....

sb22: thanks! I look forward to reading any positive stories! I've read so many bad ones. Although, I think with the whole situation, the chance of survival is very slim....

Darlene

 

[Foogirl]

Foogirl: Yes, the amniotic fluid is very important. The baby's lungs won't develop without it. That is why the outlook is so bad.....

Yeah, I went and read up on it. I wonder why that would be?

Anyway, fingers crossed for a good outcome.

 

[midori1999]

I am pregnant with twins and the membranes around twin 1 ruptured at 14+5. I knew they had ruptured pretty much straight away and went to the hospital expecting there wasn't much they could do. They expected me to miscarry within 3 days (80% of women do in thsi situation)and wen I didn't they sent me home on antibiotics (erythromiacin 4 x daily) with blood tests three times a week to check for infection and weekly consultant appointments and scans. Plus bedrest...

I am currently 19+3. All seems Ok so far, scan today showed both babies are growing and moving. Twin 2 has normal fluid, intact membranes, and twin 1 has either no or extremely low fluid each time I am scanned. I am leaking a lot still, more in the last week or so, presumably as baby produces more fluid.

Obviously as you know, the prognosis isn't that good. However, it is not impossible for babies with no fluid to develop well and not all will have poor lung development or limb constriction. I have found a few other ladies who's waters broke early, and went on to have healthy, albeit premature babies. One of whom's waters broke at 17 weeks and never really had any fluid, but did have her baby at over 29 weeks with normal lung development for that gestation.

Have you found the PROM list yet? Website is www.kanalen.org/prom Lots of stories on there, both positive and negative.

My 'story' so far is posted in the twins section if you want to read it, it's long now.

Best of luck and let us know how you get on. PM me if you like? I know it's hard. Some days I feel really positive and others I just feel like there is no way it can all be alright. And the bedrest doesn't help either, boredom is fine, but it's really hard to get comfortable!

 

[midori1999]

I didn't have this problem but I didn't want you to think we were all ignoring you!

I'm no expert, but does the lack of fluid actually affect the development of the baby? I understood it was there for protection rather than providing any kind of development or nutrition. Seems I've learned something new!

Have you been given steroid jabs which help lung development? It may be that they are only given after 23 weeks as they are usually given when there is a risk of an imminent birth.

I would advise staying off google! You will find that loads and loads of people want to tell their sad stories. For some reason people seem more reluctant to tell their good ones.

Fingers crossed this all works out fine for you. Let us know how you get on. And try not to worry too much.

Foogirl: Yes, the amniotic fluid is very important. The baby's lungs won't develop without it. That is why the outlook is so bad.....

Yeah, I went and read up on it. I wonder why that would be?

Anyway, fingers crossed for a good outcome.

They don't like to give steroids too early for a number of reasons. One is that they don't think there is enough lung tissue before 22/23 weeks for them to be on any benefit and another is that they are of most benefit for around 10 days after they are given, and in some studies repeated doses of steroids have been shown to cause neurological damage. Also, steroids are likely to exacerbate an infection and once your waters break the infection risk is huge, particularly if they break very early like with pPROM, so they won't give steroids if infection is present, partly for the mother's safety and partly as infection is likely to bring on labour.

The reason the lungs can't develop normally with no amniotic fluid is that the baby 'breathes' the amniotic fluid to help the lungs develop and soften ready for breathing after birth. Most crucial lung development is done prior to 24 weeks, so the prognosis is better for babies where the waters break after 24 weeks, but also thetime span bewteen waters breaking and labour is likely to be shorter the later the waters break.

Lack of amniotic fluid can also mean the limbs don't develop properly as they can get sqaushed and contracted by the uterus and have no room to grow properly. Club foot is quite common. Most limb problems can be corrected by physio or surgery though.

 

[Hollyberry]

Hello, I hope you're still hanging in there. My waters went at 20 weeks and I've been resting now for 9 weeks so far. Just wanted to send short message to say, please feel free to get in touch, I know how hard this is. All the best.

 

[midori1999]

Hello, I hope you're still hanging in there. My waters went at 20 weeks and I've been resting now for 9 weeks so far. Just wanted to send short message to say, please feel free to get in touch, I know how hard this is. All the best.

Hi, sorry to hijack...

Have they been able to give you any info about your baby's lungs? I have my anomoly scan next week and was hoping they could give me some info, but wasn't sure if they could tell by scan. Also, what treatment have they given you? (antibiotics, tests etc?) You have done really well to get to 29 weeks!

Pm me f you'd prefer...

 

[Hollyberry]

Hello there, I've also put reply on one of your other threads, so glad to able to speak to someone else going through same thing. Though wish noone had to. Sounds like you're doing so well. We can't quite believe we got this far, it seemed such an impossibly long way off and as I'm sure you've had, they gave us poor prognosis to begin with.

I've been on antibiotics since waters went. Bloods twice a week and scan once a fortnight. I've found the scans quite hard as it is hard for them to see much as it's the fluid that makes it work. And as babys got bigger it's uncomfortable cos nothing to cushion between you and baby. I've been getting irritable uterus cos baby moving against it. Though movements are so reassuring I don't mind. We've had no or next to no fluid at each scan but last time they could see fluid in stomach and bladder,
mw here back in bit .........

 

[midori1999]

Just tried to message, but can't for some reason. Not sure if it's because you're new and your post count?! Oh well...

I am on anti biotics too, erythromiacin 250mg 4 x a day. I think that is standard for pPROM? One of the registrars did try and tell me I only needed a 10 day course (unfortunately my consultant has been away for several weeks on his holidays) but I insisted the consultant wanted me on them until delivery, so she agreed. I am having bloods/urine 3 x a week and then seeing my consultant once a week and being scanned at the same time. Some people have said they have had vaginal swabs done weekly too, but I am not having them as my consultant said that he felt the bloods would pick up an infection quickly enough and that he didn't want to risk introducing anything to the vagina and it is best left alone. I was worried at first,but it seems to be working out so far and I trust him. He did say he has had ladies pPROM at 17 and 19 weeks and both took babies home with them, so that's encouraging.

I am the same as you, little or no fluid around the baby with ruptured membranes. There has usually been a very small pool near the baby's face though, which is obviously a good place for it to be. It is hard to see baby on the scans due to the lack of fluid, but we have seen him/her move a few times. He/she seems to be growing fine too.

I noticed you mentioned midwives on your other post. I feel your pain!!! I have found them totally useless on the whole and although medical staff seem more positive now I am further along ( I was origially told I would very likely miscarry within three days) they are either extremely negative or very blase, as if it is no big deal, I thik because they haven't a clue what they are talking about. One even took my bloods thinking I was coming in due to a UTI as she obviously hadn't read my notes. I am now having bloods done at home, which is better, although sadly I have one of the useless midwives.

They have discussed steroids with me. I have been told so far they will be given at 24 weeks and not a day before, but when I see my consultant again next week I am going to discuss having them a little earlier, also having a second dose later on at around 28 weeks or so if I hold on that long. They are talking about readmitting me to hospital at 24 weeks.

I agree, it is nice to find someone going through the same thing, it is really hard for friends and family to understand it all, probably not least as I seem fine in myself.

 

[Hollyberry]

Back again! Mw been and had steroid injection- sounds like they've said the same to you as to us, we had to wait til 24 weeks for first lot and should have had second last week but my consultant was off sick and had t signed it off. Glad tho that community mw could come out, but that took my husband pushing for it as it's an hours drive to the hospital and hour back and so uncomfortable over bumpy roads and I end up losing fluid everywhere. Tho can't seem to do anything to stop it now babys bigger- keeps getting pushed out.

Don't know about seeing lungs on scan- they haven't looked for them with us tho did read somewhere that they could be seen but poss not til later. They seemed more concerned with looking in stomach and bladder I suppose to make sure all is working and fluid is being weed out. Growth has remained more or less on normal range which is good.

Yes, mws at hospital have been either really wonderful or awful- went in couple weeks ago cos started losing clots. Was losing fluid and blood and she said someone else needed the bed and could I go wait in hall for husband to pick up- there weren't even any seats! And if I have to have one more speculum examination .........

We've been discouraged from considering hospital admission due to greater risk of infection so I've been at home. We've never been sure what was best but did spend 2 weeks in and was starting to go crazy. Luckily ended up with own room as very hard to be on antenatal ward with mainly almost full term women on monitors but then it gets lonely. Take plenty to do! We are going to ask to go in if we make it to 32 weeks as they'll induce after then, 34 weeks seems to be the latest they'll wait as risk of infection increases after then. I'd rather be there for the last bit, we are bit worried now in case I go into labour being so far from hospital and my husband over an hours commute away in Leeds at work.

There was a woman last year at the hospital who had prom at 17 weeks and took home baby this jan so there are encouraging stories. We just need to hang onto the positives and not lose hope. Tho we have been told we need to remain realistic too, the midwife today was talking about being prepared for possible health problems. Friends and family seem to find that the hardest bit, that we never reach a point where they can be reassured all will be fine. I've even had a couple of friends disappear cos they don't know what to say and can't cope with situation.

How are you managing with boys? My in laws have been a godsend coming every couple of weeks to help, really hope you have lots of people to lend a hand.

I've had lower vaginal swabs every week, but as you say I don't think they show anything quicker than the bloods.

Did try to pm you but yes must be cos only just joined.

Loads of hugs x

 

[Hollyberry]

Ps. Yes on same antibiotics, read loads about pros and cons of long term use, no harm to baby- main prob is possiblity of developing antibiotic resistant strain of infection but this seems low. And seeing as biggest threat to pregnancy continuing is infection it seemed like best course of action and constant recommended too. Tho again, got into arguement with mw at hospital who said shouldnt be taking them!

 

[midori1999]

I've had some bleeding too, although not much and they couldn't see where it was coming from. I think it is fairly commong with prom, although I also have a low lying placenta, which can also cause bleeding.

We had a dreadful appointment a cople of weeks ago where I was kept waiting for almost 2 hours to see a registrar. Not because they were being, but because they are disorganised and useless! We kept seeing ladies that had arrived well after us go in first. I hate complaining, and kept telling my husband not to, but I was sat there feeling fluid leaking out of me and so in the end I burst into tears. At that point, hubby got a bit cross and complained and so now they 'fast track' me at my appoinments and get me straight in. Especially annoying as there was obviously then no fluid at the scan and there would have been when we first got there.

Family are hard to deal with. Obviously I don't want to paint too negative a picture, but I feel I need to be realistic (albeit hopeful!) so that people are prepared. My Mum and sister have been great, but we have (unbelievably!) had a couple of comments along the lines of it's ok as we have another baby in there that is absolutely fine, and it's not so bad if we lose these as we already have three children. Also, my ML keeps emailing my husband regarding a medal presentation he is supposed to go to at Buckingham Palace to find out the dates so they can go with him!!! (He has told her he'll tell her when he knows when it is, but obviously he has other priorities at the moment!)

Do you have other children? We live away from relatives, but have lots of very, very wonderful friends who have offered to help. I think my Mum will try and come to stay once the babies are born, when we'll need it most, I expect.

(ps. sorry for yet another lengthy post, can you tell I have too much time on my hands?! )

 

[Hollyberry]

That's fine! I've got loads to say and ask but using my iPhone as easy to use lying down rather than try to balance laptop. It's come in so handy, I've downloaded films and audiobooks for if go back into hospital and can play games, watch BBC iplayer and listen to classic fm to relax me when lying awake at night. And can get on Internet. Only prob is awkward keyboard so hard to type lots! Sorry, will stop phone bore!


My placenta was lo lying at 20 weeks but they found it again last scan and thankfully it's moved up as uterus has grown. Think this is quite common. So hopefully yours will prob move too.

It is hard getting the balance with other people, as you say you need to be realistic but hopeful. My m-I-l has been winding my husband up with constant - I'm sure everything will be fine. I know she's trying to be reassuring but he feels she's not taking the whole picture on board, they have been great coming all way over from Lincoln to stay every so often though. All the washing gets done and kitchen cleaned properly!

I've one other, boy, aged 12, he's found things hard as he's got the whole teenage hormone thing kicking in and his emotions are all over the place. Mw says she'll get in touch with health visitor this week to see us as they can offer whole family support which we'll need whatever the outcome. Husband finding it all very upsetting and I feel terrible cos this is his first and we lost one last year. How are yours coping? Is your husband ok with work? My husband s work was great- he's been allowed to work from home a lot but now they're getting bit twitchy cos didn't realise would go on for so long, even tho he told them that would be the best outcome. He's had to start sleeping in spare room tho cos I'm up so much in night which makes things hard in terms of being close and supporting each other. Anyway, little and often food time. More later, big hugs x

H

 

[Abbiekye]

hun, keep positive all will be well.
without saying much i had similar problems with amniotic fluid in both
pregnancies and although the girls were born extremely early they are
healthy!! I remember a consultant saying to me once that 'medicine does not
have all the answers and the impossible can be possible'!!
xx

 

[Foogirl]

Can I just also say to you new ladies who may have a premature birth - if you are in the UK, the minute you hit 25 weeks, hound your midwife and get your HIP grant from from them and sent away. HMRC have confirmed you lose entitlement to it as soon as your baby is born, so if they come early you can't apply for it after that.

I had a nightmare getting the form from the midwives so you might need to pester them. Don't let them fob you off with "you'll get it at the next appointment" because, like me, you might find you never actually get to that appointment!

 

[HopefulAmber]

Hey girls! Just wanted to introduce myself and say hello! I ppromed at 15 weeks and am now almost 31 weeks pregnant! I too, have had little to no fluid around baby as far as I know of. Ultrasounds are weeks apart. Sometimes I leak, sometimes I don't. I am in the hospital. Have been on bedrest for 15 weeks..7 of those in the hospital. I just wanted to say congrats to you mama's for staying positive and believing in your babies. DON'T let ANYONE tell you the outcome of your baby. You are your babies voice and these people are NOT God. Congrats to you ladies for being that small percentage too who haven't gone into labor. There are TONS of support out there and I wanted to invite you ladies. There is babycenter and if you go to the group bedrest club and click on Original (P)PROM thread..you will meet a TON of us ladies who are too, going through the same thing. Also you will find tons of links to positive stories! If you have faith and believe in God and your baby..then God will do the rest. Let me know if you ladies ever need to talk. I am here..ALWAYS! This is one of the most hardest experiences I have ever gone through. We WILL get through this though! Stay positive ladies..your doing a great job!

Also..with little to no fluid..there are many babies who have been born healthy or even had good enough size lungs to be on the vent right away and develop healthy lungs over time. I feel an ultrasound is a snapshot over time and our babies are ALWAYS replenishing fluid. Our placenta provides it and after 14 weeks, baby also helps with it too.

If any of you have a facebook..in the search bar, type in premature rupture of the membranes. There is a huge group of ladies there who have been or are going through the same thing. Click on discussions and you can read tons of positive posts.

xoxo,
Amber

 

[hallielou mum]

anyone still goin through pprom like me???????????