By Mandy, Leeds UKwe don't know when Prom happened to us - I have guessed at 17 weeks as that is the time the doctors presumed it happened. It could have been much earlier however we just know it was between 12 and 18 weeks. I hope this story helps someone going through this horrendous time. Please feel free to contact me. Apologies for the length of the story but I know from reading others that details are important when you are in this position ...
PROM at 17 weeksDelivery at 29 weeks + 6 days.
Story added: 2007-11-25
On December 13th 2006 I found out I was pregnant. After several months of trying to conceive we were absolutely delighted. The first few months of my pregnancy were uneventful, just the normal morning sickness and tiredness. When I reached 18 weeks I received a phone call which was the start of the most terrifying time of our lives. It was a nurse to say our triple test results indicated that our baby could have spina bifida and we would need a scan later that week to find out. That Friday we went to Pontefract for the scan and after about 20 minutes of scanning the radiologist went out the room. When she came back she said that we needed to go and see a midwife downstairs in the day unit. I was now beside myself with emotion although when we got downstairs the news was fairly inconclusive. The midwife said that the scan showed the baby had hardly any amniotic fluid surrounding it and they could not see clearly so we needed to be referred to a specialist in Leeds. The next appointment was the following Tuesday. After a very sleepless weekend spent reading up about low amniotic fluid we went to Leeds feeling very pessimistic. All the internet sites we looked at gave a very poor prognosis for a baby in low levels of amniotic fluid so early in pregnancy. I read that a way to help raise these levels was to drink as much water as possible. In our mind this was the only way I could help this unborn baby we already loved so much survive. So for the remainder of the pregnancy I drank between 3 and 5 litres of water a day.
At LGI the consultant scanned me and the news was not as bad as we were expecting. Our baby looked perfectly fine to her (no spina bifida) but she could still not see very clearly as the fluid levels were still low. She was not worried about this, however, and said they would keep a close eye on me but they thought the outlook was not too bad. We left feeling quite positive with our appointment booked in two weeks. In this two weeks we got back to some normality and, as a teacher, I returned to work. I had taken the few days off between the last two scans as I didn’t feel emotionally able to cope with work.
When the day arrived for the next scan we were quite relaxed and we decided that my husband didn’t need to attend this scan as he was using up his holiday allowance extremely quickly! Accompanied by my Mother in Law I went to Leeds on the train and back to LGI. As soon as the consultant began the scan I knew something wasn’t right – the doctors mumbled between themselves before finally telling me there was hardly any fluid again around the baby and this was very bad news. We were told that there were three possible causes of low fluid levels and they needed to find out which one it was. We were told that the first thing they needed to do was a chorionic virus sampling (CVS) test to rule out a genetic problem with the baby. Earlier in the pregnancy I had been opposed to any such testing but now it seemed like a necessity. I rang Dean (my husband) in tears and we decided I would have the CVS test done there and then. I was terrified that our baby would be harmed and we were very lucky that the procedure was uneventful and the following day the results came back showing there were no genetic problems. Another cause of low AFI (fluid levels) could be lack of kidney function or bladder problems but again the scan had shown this not to be the case.
We now had a two week wait until we saw a consultant. In this time we were both confused as to how I could have low fluid levels as the only remaining possible cause was premature rupture of membranes (PROM). We were sure this wasn’t the case as I would have known – wouldn’t I? The day finally arrived for the consultant appointment at Pontefract. We naively presumed that this would be a very quick appointment as he had never scanned me and did not really know our history. We guessed (wrongly) that he would just say the consultant in Leeds at the next day’s appointment would give us details and put a care plan in place. So considering this we decided Dean should go to work that day and have the next day off for the important appointment. This was a bad decision, which we both regret now. The consultant that day absolutely devastated me when he told me the chances of us having a healthy baby were very slim and the best option may be a termination. At this stage I was 23 weeks pregnant and our baby was moving around. He also said that I was now given the diagnosis of PROM and as such I was at a high risk of contracting a serious virus, which could harm the baby and make me infertile. I asked as many questions as I could think of through my tears and my Mum was a fantastic support. The consultant said I could go home to ring Dean and make my decision but they would get me into labour ward that day to deliver if I decided upon a termination. I was adamant that I would never terminate this precious baby but the prognosis for our baby was so bleak. We were told that he would definitely be premature and probably within the next week or two, he would probably have pulmonary hypoplasia and he would probably have many limb abnormalities due to being so squashed.
Devastated at the news I went home. I rang Dean straight away. All I could say was “they want us to terminate but I’m not, they have said the baby will probably die”. Dean came straight home equally distraught. When he got home my Mum explained everything that had been said. At this stage our opinions began to differ for the first time. Dean said he had to think of me and if I was at risk of contracting a virus, which would not only make me infertile but could threaten my life he had to prioritise me. These factors never crossed my mind. This baby was my priority and there was no chance that I was having a termination. Dean was very opposed to terminating the pregnancy but felt like he was stuck in the middle and did not know what to do. We spent a long afternoon and evening discussing our options, crying and researching on the internet. In the end we decided we would wait to see what happened at the scan the next day and get a second opinion – thank goodness we did.
At LGI the following morning we both felt sick as we waited for the consultant to see us. Finally we were called in to the room and I was in tears before I’d even got onto the bed to be scanned. We explained what we had been told and then the scan began. Amazingly the fluid levels had risen slightly to just within the normal range. Afterwards we were told that there was now a small but significant chance that we could have a healthy baby. Dean mentioned 50% but the consultant immediately said no it was much lower than that but there was a small chance. On hearing this our decision was made. We would continue with the pregnancy, I would be on bed rest for the remainder of the time and we would return to Pontefract the following day to put a care plan in place.
We left Leeds feeling slightly more positive although we knew we had a testing time ahead of us. At Pontefract the following day it was decided that I would attend the day unit twice weekly for blood tests and swabs to screen for infection. I would also have fortnightly scans and consultant appointments.
The next several weeks were one huge long scare. A week after making all these decisions I began to bleed and was admitted to hospital. We were shown around SCBU, given steroids and survival rates for a 24 week baby. After 4 days with no contractions I returned home only to be readmitted several times in the following weeks. By now I was losing fluid almost as fast as it was being produced and it was nearly always mixed with blood. I was on a constant countdown to 28 weeks as this is the stage that our SCBU accepts premmies – before this time and I would need to be transferred.
Once I reached 28 weeks I relaxed a little but when I was 29+2 I woke in the middle of the night with regular contractions. I rang labour ward and was told to get there immediately with my bag as SCBU was full and I would need to be transferred if I was in labour. On examination they found my cervix was long still and not dilated. The contractions continued though for a couple of days so I was kept in as a precautionary measure.
On the Saturday I was allowed home. I was very uncomfortable and finding it difficult to walk properly. I put this down to the fact that there was no fluid protecting the baby and that meant it would be bumping against me. The contractions continued and became even more regular the following day. We were going to have dinner with my Mum and Dad at their house. It was a treat to be going to lie on a different sofa for a change! When there the contractions were 10 minutes apart but as the hospital hadn’t been worried the day before I decided not to worry either. Whilst eating dinner they became more regular to the stage where they were every 3 minutes. At this stage my Mum insisted we went straight back to hospital.
On arriving in labour ward I was given a speculum examination. This is the only type of examination they will do if your waters have gone to avoid infection. The doctor said I was in labour and at least 2-3 cm dilated although he couldn’t see fully. We were both terrified. We were sure it would be another false alarm – it was much too early for our baby to be born. The next bit of bad news was that SCBU was still full and they would need to find a cot and transfer us ASAP. This couldn’t be done immediately though as I was contracting too much and had to be given drugs to slow the labour down. I was also given antibiotics in case an infection had set in. Dean was rushing around phoning people – we didn’t even have my bag with us as we’d come straight from my parent’s house. My Mum and Dad arrived with my bag at roughly the same time as the ambulance. We were relieved to hear there was a cot at St. James – only 20 miles away. We were transferred with flashing lights and sirens in an impressive 19 minutes!
I was devastated that we’d had to be transferred. After spending several weeks in our local hospital I felt like I knew the midwives and was confident that I would be well looked after. Arriving in a strange hospital when you’re in premature labour is an extremely frightening experience. The first midwife looking after us did little to ease this. She just kept asking why I wasn’t asleep and gave me 2 co-codamol for the pain! I explained that I was in a lot of pain and it was only much later that I got an injection of morphine. Although this helped she was still insistent that I should be asleep. I kept saying the pains were worse and more regular but she didn’t examine me or do much to ease my worries. I wasn’t even offered gas and air!
At 7.30 am the nurses handed over and the new midwife came in to see me. I told her I was in a lot of pain now and felt that I needed to be examined. She said the doctors would do this when they did their rounds at 9am. At 7.50 am I said I could wait no longer and needed to push so she gave in and finally examined me. On doing so she said the head was right there and the baby would be born very quickly. However, I still couldn’t push as she hadn’t set up and she needed to call the paediatric crash team. This all happened very quickly and with 3 pushes our beautiful son was born at 8.06am.
It was only when he was born that the fear closed in on me. What if our baby had no lung tissue as we had been warned? What if he didn’t live? Then we heard a cry. I know everyone says that is the best sound in the world but it really was for us. After all this worry our baby was here and alive! The paediatricians quickly showed us Jacob Lewis before whisking him away to NICU.
He was in hospital for 52 days and is now home safe and well. The only ongoing issue with his health is a mild heart murmur. He really is a miracle ... I hope someone gets some inspiration from our story.