They told us we are one in a million,
we believe with the right care more can follow
Trust Your Instincts
PPROM story by mum Rose Sumner
PPROM 16 weeks 5 days gestation birth at 33 weeks 1-day gestation
Nathaniel was born emergency Caesarean section and born in the UK
On June 14th, 2016 at 16+5 weeks pregnant with my second child I awoke from an afternoon nap and headed to the toilet on my way I felt a huge gush of Fluid and immediately realised my waters had broken as they had broken on their own with my first child as well.
I called L&D and was asked if I had wet myself, as I was very early to have broken waters I insisted that my waters had broken and was then told to call my GP by this point it was around 5 pm in the evening I had a doctors appointment booked for around an hour later just so someone would see me, my appointment ran nearly an hour late and I was finally seen around 7 pm and was told by a doctor that I should have gone straight to hospital and to go there so I finally did and was finally seen by a midwife around 4 hours after my waters broke which was very distressing as second labors I heard were much quicker than firsts and did not know what was happening. I was given a speculum and ultrasound and told there was no fluid and there wasn't a good outcome for my baby so was left on a table lead flat for an hour to see if any more fluid would leak out which it did not. I was then given a room to stay in overnight as they needed to observe me for signs of infection and labor, nothing happened over night and I felt fine with no visible leaking so was scanned again in the morning and told by a doctor that it's highly likely I could go into labor and miscarry within the next two weeks but that I could go on and have a normal pregnancy but that they just didn’t know what was going to happen to me.
I was released from hospital that same morning and the only advice I was given was to return if I filled more than two sanitary pads filled with blood, nothing about what not to do to avoid infection luckily I have a nurse for a mother so was lucky to have someone to give me the do’s and don'ts to help myself, information that I was not receiving anywhere else.
I stayed in bed for the following week just waiting for something to happen I had no sign of fluid this entire time but managed to do some research and that’s when I came across the little heartbeats website I then waited until a fetal medicine appointment I had booked for me came 6 days later, At the appointment the baby looked healthy and my fluid had risen to 2.6cm from none which gave my midwife some hope for me he believed that fluid levels cannot increase and reseal that he had never seen it in his career personally but that at the moment that’s what it looked like was happening. He also said my placenta was very low lying but that he was not concerned about my placenta, I was told to carry on my life as normal that there were no restrictions however I was not convinced by these words and I stayed on bed rest and returned 2 weeks later to find my fluid had risen a little more to 3.4cm which made me start to be hopeful but when I left the hospital that day my waters broke again while out shopping for the first time since they first ruptured I was 19+4 weeks and when I phoned the hospital in panic they told me I was not 20 weeks so they would not take me into L&D and that there’s nothing they would do as I had already had an ultrasound that day but just to look out for signs of infection e.g temperature etc but once again no mention of no sex or baths danger of sepsis, public toilets this concerned me that I still was not told the danger of living with broken waters.
At 21 weeks I started losing blood old and new very lightly and grew very worried that I was miscarrying so I phoned the hospital and was taken into L&D for observations which I had done and was told that the bleeding must be from having a very low lying placenta and gave me antibiotics for the first time incase of infection but was never scanned…
At 23+4 weeks pregnant I returned to my fetal medicine midwife for my appointment which I had waited a whole month for so no one had checked my baby in that long apart from on a Doppler he looked at my ultrasound in about 20 seconds he turned it off and told me to go next door when I was waiting he came into the room with another midwife and told me that I had no fluid again and that it was looking very very bleak. I said I had been leaking on and off since he had last seen me so I asked for steroids to help his lungs and was told that steroid wouldn’t help my baby because he would have no lungs but I would have to ask my OB in one months time. (at this time I didn’t even know if I could stay pregnant another month) He also did not state that he was concerned by my low lying placenta. This all made me grow rage because lungs cannot be seen in ultrasounds so to be told by a medical ‘professional’ that my baby would not have lungs and his chances were extremely small even if he was born at term made me very angry.
There was no compassion or sensitivity to my situation he then went on to say that if I was not terminating he was going to hand me back to my obstetrics care. Immediately I was gobsmacked because I was offered no support with such devastating words and then felt like I was brushed off to go home and wait for my baby to die… I was in a lot of distress after being told such bad news just a few short days before my aim being to stay pregnant until viability at 24 weeks.
Two days later I visited my midwife and told her what had happened she said it was within my right to change my medical care and hospital, which I did and ended up at St.Michaels Hospital in Bristol for the remainder of my care.
I then put myself on complete bed rest I didn’t go outside and my daughter was put into full-time child care I took high levels of vitamin c and drank a pint of coconut water every day I was then seen by my new obstetrician 3 weeks later and was shown to have Grade 4 placenta previa and 10.8cm of Amniotic fluid surrounding my baby. I was then 26+4 weeks pregnant and given a 4 out of 5 chance of healthy lung development and the high chance of cesarian section due to my placenta being in a dangerous location and that I would be admitted to hospital if I start haemorrhaging.
This was a dramatic difference to the practically no chance of survival I was given just 3 weeks prior and now I had the likelihood of getting to meet my baby but was also haunted by the thought that if I had terminated would have myself and my baby both died together because my placenta would have been in the way for delivery and was told there was no concern from a specialist Fetal midwife and obstetrician. I am so glad I held on for a second opinion it may have saved both of our lives.
I returned every two weeks for monitoring and scans to my new hospital and ended up with a wonderful understanding Obstetrician, I still was not given steroids but was told I would receive them if labour was imminent. but was allowed to come in every day if I wanted but felt I was doing everything I could for myself at home.
At 30+4 weeks pregnant I woke up and started hemorrhaging I was alone and my daughter was asleep next door I called my mum and then an ambulance and was taken to hospital luckily my bleeding had stopped a lot by the time I had arrived so after 24 hours in L&D I was taken up to the ward during the first 24 hours I was finally given my first round of steroids and again the next day this really out my mind at ease and gave me great comfort.
I was told if I had not bled for 48 after my last bleed I would be allowed home but every time I went to go home I would bleed once I had my third big bleed I was told I would not be going home the words I did not want to hear… I was missing my two year old and was in the hospital for my Birthday which was very hard to live with. At around 31 weeks a week being in hospital I had a cannula put straight through the nerve in my left hand I’m now in pain every day as magnesium infusions were then put through the same cannula causing me a lot of pain… 2 more weeks past in Hospital and on my fifth hemorrhage at 33+1 weeks it would not stop I was bleeding out and contracting there was a lot of panic and rushing around I was prepped for surgery and was losing a lot of blood quiet quickly I cant explain the emotion you feel when someone looks at you gripping your hand like your going to die… they couldn’t put my epidural in or get lines in my arteries because I’m so small, my blood took around two hours to get to me so I was bleeding waiting for my blood before they could take my baby out…
During surgery I gave permission for my blood to be recirculated back into my body because it would have been better for me I’m very underweight and was lucky to have not had a cardiac arrest for the amount of blood I had lost
At 2:29 pm on October 7th, 2016 at 33+1 weeks I heard the sweetest cry I had ever heard. It had been the hardest 16 weeks and 4 days of my life but my baby boy was born with lungs and that’s all I cared about he weighed 4lb 4oz. He was put onto CPAP and oxygen for a few hours he was then transferred away to another hospital because NICU was full up but I was told that he was the best a 33 weeker could be. We were both treated for suspected sepsis and I was found to also have placenta accreta and was told I was very lucky to be alive and to not to have any more children. Nathaniel spent 15 days in NICU He needed phototherapy and glucose drips for his blood sugar and was released home with no help or support needed on October 22nd, 2016.
However he nearly died in November when his lungs collapsed from a viral infection but this was to do with his prematurity, not PPROM and he is a happy healthy baby again now. I now suffer from PTSD and attend counselling. My relationship also broke down during the experience.
It is not easy to live through but it is worth it in the end.
Medical Professionals might be against us but we should all trust our instincts I did and now I have a wonderful child!
PPROM story by mum Bee Baxter
PPROM 18 weeks gestation birth at 32 weeks gestation
Cora-Kathleen born in the UK
When I found out I was pregnant I was beyond thrilled, every milestone of what the baby was doing came up weekly to remind me of the development of my baby each coming week. When I was 16 Weeks me and my partner ben booked for an early gender scan, we already have a son and we're longing for a girl as the last girl in the family was me (22 years ago) it was booked for 17 weeks! 17 weeks came and we went to the scan and to our surprise there was no little boy bit but in fact we was having a little girl!!
As soon as we left the private scanning clinic we went shopping for little girl dresses shoes and head bands! 18 weeks came and we was doing our weekly shop around Asda when all of sudden I felt wet!
Embarrassed I went running to the toilet to my horror it was waters I could tell because of my previous baby Chase plus I was bleeding! I rushed out to tell Ben who was waiting outside and he immediately picked our son up and got us into the car, we rushed to the hospital without even ringing them. All the way there I could feel the water gushing out I was in tears thinking of my little girl who was so far before the viable age.
We arrived at the hospital where they put me in assessment room straight away and examined me down below the only words I heard was ' confirmed positive for amniotic water' this was when the consultant entered the cubical and told me there wasn't any chance for our baby that we had decided to call Cora-Kathleen (after my late nan) We was devastated, I was sent to a ward next to newborn babies crying knowing my baby that was inside me would never cry. All night I was balling my eyes out, ben had to go home with Chase over night and I felt so alone, morning came and the consultant came round and told me he could fit me in for a termination that day I panicked and refused it was all too much needed more time especially when I could feel the little flutters of my little girl. I discharged myself and went home later that morning as everyone was suggesting that I should end my baby's life! I eventually refused and I told them I would allow nature to take its course at least then I knew that I'd tried to give every chance I could. As the weeks went by instead of looking at cots and Moses baskets we was looking at coffins and ideas on headstones. At 23 weeks I started having contractions ben again rushed me to hospital where they found I was 2cm, neonatal team came to see us and explained because she was 7 days before viable age they wouldn't help her and just watch and see if she put up a fight and if not they would allow her to pass away I was in agony mentally and physically, over the course of the night the contractions kept coming but the cervix wasn't progressing any further, the eventually gave me pethidine so I could sleep I awoke 4-5 hours later to the contractions completely gone MIRACLE! I was again sent home after 3 days of monitoring contractions, and had weekly visits to the neonatal surgical team unit and at 25 weeks I was given steroid injections to help my baby's lungs this was after I begged for them, each week and each scan was the same 'no measurable fluid, baby compromised'. All I wanted was to get to 30 weeks as research had shown a 30 weeker had as much chance as a full term baby and also whilst researching I found little heartbeats and all these amazing story's of women going threw the same thing and there babys surviving I just hoped and prayed my baby was one of them.
I turned 30 weeks and we threw a little baby shower celebration, but at 32 weeks those contractions started again and I suddenly developed a temperature of 39.0 they told me they needed to get baby out so they hooked me to a drip to intensify the contractions, hours went by and at 17.36 2nd August, 2 months before her due date Cora-Kathleen arrived.
At first there was no cry as the neonatal team fought to get her breathing then we heard her cry and just screamed with joy. She weighed the most amazingly 6lb 3oz and required no support other than a close observation and antibiotics. She stayed in hospital for 2 weeks and she returned home and joined her brother Chase She's now nearly 4 and the most amazing little girl in the Whole World.
PPROM story by mum Tasmin Jones
PPROM 32 weeks gestation resealed at 34weeks, birth at 34 weeks & 2 days gestation
Rhea born in the UK
Hi, looking through this FB page really helped me while at home with PPROM so id love to share my story to think even if it helps or comforts just one other person...
One morning at 32 weeks pregnant, i woke up, my partner & i lying in bed feeling our little girl wriggling around as normal! I got up to get ready for work and noticed that id had 'a show', in a panic i rang my mum and the hospital and we made our way, the hospital was roughly a hour away, once we got to the triage unit and id been monitored, the midwife had looked at more of 'the show' that id been loosing, and examined me seeing my sac of waters, she was happy with everything all ready to send me home and we joked about skiving work and getting breakfast on the way back. Thats until the test came back positive to me losing amniotic fluid. I was un aware of any fluid loss. I was straight away given my first steroid injection and started on a course of antibiotics incase of infection, and admitted on to the antenatal ward, i was given leaflets on PPROM and a midwife came and explained to me about how a baby would be born at 32 weeks. Hours passed and nothing happened, i was asked constantly if id lost any more waters, explaining i was unaware of any fluid loss in the first place. I was took for a scan and as soon as I saw our baby on the screen i broke down into tears, it all got to much, i couldn't see the screen properly through my teary eyes, but reassured all was ok with our little girl and she still had a normal amount of fluid around her, me thinking of course she had, iv not lost any water?! After 2 nights in hospital nothing else happened and i was discharged on the basis i was agreeing to 'self assessment'
Keeping a eye on my babies movements , my temperate, and continue with my antibiotics, being seen every 3 days till my scan 2 weeks later to measure fluid loss. I couldn't go back to work so i kept myself busy but also had to much time to worry about the slightest thing. I constantly wanted to feel my baby move, and luckily she had always been active so this made it easy for me, it was very hot weather so i was paranoid about my temperature constantly! 2 weeks passed, 34 weeks pregnant ,seeming like the longest 2 weeks of my life!
But we got there, scan day! No sign of infection and a constantly busy babe, i should of been more relaxed, I could feel my nerves as i sat in the waiting room thinking we would need the hospital bags out the car! And finally there she was, my baby on the screen surrounded by lots of amniotic fluid. I literally felt the worry leave my body and reassured all was ok from the consultant ,the relief took over and i could enjoy seeing our little princess again.
I was told to go back to normal low risk pregnancy and continue with my normal antenatal care, and the consultant explained that the tests for amniotic fluid can be wrong. 2 days later I'd met a friend for coffee, walked around town gathering things for my properly packed hospital bag, even though I was given the all clear it gave me the push to get organised! I sat down on the sofa for a rest when I'd got home, the baby was very low from 30 weeks so I'd felt uncomfortable walking round for weeks anyway, I was about to take a little afternoon snooze, when woosh, there it was, my waters! Got to the hospital again, and I kept getting asked 'so you think you have lost some fluid now' .. no, this time my waters had definitely gone! With a examination the midwifes could still see my front waters, so I'd only lost my hind, she explained that i may have to go home as the baby is still protected, until mid examination her eyebrows raised surprisingly! I was 4-5cm and sent to the delivery suite!
I stayed calm with the reassurance that id had the steroid injections 2 weeks previous! There was a impressive looking machine in the room, i tried not to give it much thought! I had a good labour although being a small babe she took some extra pushing, but as she was nearly out the called the Neonatal Dr to the room, i couldn't really give it all much thought i just wanted to meet our baby girl, and then here she was, born into the world, weighing 4lbs 11, breathing on her own! She was put straight onto me and before i had time to take anything in the Dr had her on this impressive machine, I remember i just kept asking 'is she ok?' The Neonatal Dr managed to give her back to us for a short time for us to get another quick cuddle and then she was gone, but i knew i was in love! When i went to see her again the midwives pushing me along the corridor I just felt weird, what am i going to see? I didn't know what to expect. And then there she was! My beautiful girl, I was instantly in love! I almost couldn't see the wires & tubes as i was to in love staring at my gorgeous girls face! Sat next to her staring at my perfect girl, the nurses then convinced me to sleep as id delivered through the night i was falling asleep in the chair. The first few days seemed like the most positive, everything moved quickly, her Cannula was soon out as her bloods came back fine, no sign of infection! She started taking some bottle feeds, she moved down to the last bay as she was doing so well! She came off the monitors and I had home life in my sights! But with Jaundice levels on the rise it turned into a vicious circle. She would feed really well and come off the UV and into a normal crib and id think 'yes this is it'. But with in hours she would stop feeding as well, being sleepy due to the Jaundice going back to treatment and she would be back in the incubator and having more tube feeds.
This was so frustrating, it felt like a vicious circle that was never going to end. I had a good recovery i was desperate to be home, luckily i was able to stay in the Family Flats the whole time, i didn't want to leave my baby but also i just missed home, i felt a lot of frustration, cabin fever from the hospital but i could not bare the thought of going home with out my girl! 'Its down to Rhea' the Dr's would say! And it really was, on day 10 she decided to pull out her feeding tube!
A new one was put down and she did it again! Its like she knew she was ready and it gave the nurses a reason to keep up with the bottle feeds, they did and Rhea took to each feed well.. her Jaundice just kept dropping with out any treatment and literally from one day to the next it was a different story! On day 11, 'She can go home tomorrow' the Dr's told me on that ward round, as quick as that! I cried instantly and I felt like id won the lottery! A day i never thought would come and words i never thought id hear! We spent the night together in the flat and the next day when i sat in that car looking at my baby, i looked back at the hospital and cried 'what a journey' i thought.. my baby girl is now 7 weeks old, gaining weight well and perfect its all a distant memory till i look at photo's and realise how far we come! We will never know if the test was right or wrong, or if it was a coincidence! But im glad i took the precautions and advice anyway for my healthy baby girl.