By Ellen, London UK
PROM at 15 weeksDelivery at 28 weeks + 2 days.
Story added: 2015-01-19

I discovered I was pregnant in early March 2014. I didn't have particularly bad morning sickness, and apart from queasiness and few aches and pains everything seemed very straightforward. At my 9 week booking-in appointment the midwife told me that since I had conceived easily and I was relatively young, healthy and a non-smoker, it should be an extremely low risk pregnancy. Just before my 12 week scan I started to have pain which seemed a bit worse than normal cramping. It lasted from Friday through the weekend but seemed to get better on the Monday. On the Tuesday I had my scan; though the baby seemed fine they noticed something on the edge of the placenta which they said could be a clot (they seemed surprised that I hadn't experienced any bleeding). They referred me to the Fetal Medicine Unit as a precaution, although they didn't seem particularly concerned. Several days later I did experience a small amount of bleeding and was scanned in the early pregnancy unit, where they found a heartbeat and confirmed that there didn't seem to be immediate problems. At 14 weeks, the Fetal Medicine Consultant rescanned and confirmed that there was a large clot on the edge of my placenta and evidence of internal bleeding. She explained that there was a risk that the bleeding could irritate and rupture my membrane. This only increased my risk of preterm delivery by around 10%, but that she would continue to monitor me monthly in the Fetal Medicine Unit. Several days later, just before 15 weeks I started to experience more pain. I went into hospital to be examined and was told that it was likely to be round ligament pain. I was scanned and everything seemed fine. The following morning I woke up and thought I had had more, watery bleeding. I went into hospital again and they found a heartbeat, but scanned as a precaution. I could see on the screen that there was something wrong - the doctor explained that there was almost no fluid around the baby, and got a fetal medicine consultant to confirm. The consultant explained that it was likely that I would miscarry very soon, although there was a small chance that the membrane would reseal. I was prescribed antibiotics, advised to take my temperature regularly and told to come back in a week for a scan. The consultant mentioned that at this stage some parents would take the decision to terminate as 'it was all a bit too much'. Our instinctive response was that it was a bit too much, but that we were committed to the pregnancy and wanted to keep going. A week later the same consultant rescanned and there was still almost no fluid, although there was still a heartbeat. I was asked several times if I had felt fluid leaking, but at this point I couldn't. The consultant strongly implied that the best option would be to terminate. I said that I didn't want to when the baby seemed healthy. He replied 'What do you mean by that? There is no chance this baby can be ok.' I then spoke to two neonatal consultants who agreed with this prognosis and wrote in my notes that 'there is no realistic prospect that the baby can develop viable lungs.' After two desperate days at home, expecting to miscarry at any point, and terrified that termination was the only option, I went back to see the first consultant I had seen in the Fetal Medicine Unit. I asked her if there really was no hope, and she replied 'I can't tell you that'. She said she had once treated someone in a similar situation who had delivered a healthy baby at 34 weeks. She talked us through the research on PPROM and the risks involved in continuing with the pregnancy - there was roughly an 80% chance that I would miscarry naturally or that the baby would have to be induced as a result of infection, a 15% chance that the baby would be born with severe complications and a 5% chance that I would deliver a more or less healthy baby. On that basis, we decided to go ahead. Over the coming months we tried to achieve a difficult balance between being realistic about the prospects for the pregnancy and hopeful that we might have a good outcome. We read some of the medical literature ourselves, and I looked at websites like this and blogs - the good and bad stories on this site in particular helped me keep going on the difficult days. From everything I read, I became convinced that continuing with the pregnancy had been the right thing to do, since even a very small chance of the baby being ok was preferable to the 100% chance of losing it if I had terminated. Initially I went back to work, as my consultant advised that bedrest would not help. Around 20 weeks, however, I had some abdominal pains, and I was now aware of fluid leaking. I was signed off work and told to rest at home. I took my temperature every 4 hours to check for infection. I didn't have baths because of the risk of infection, but washed very regularly. I also drank at least 3-4 litres of water each day. I didn't do bedrest, but I avoided leaving the house except for medical appointments and I tried to rest for a lot of the afternoon each day. I was even more careful than i would normally have been about eating well and avoiding certain foods. I avoided lifting things or doing anything around the house, which was only possible because my husband took over all the housework and cooking, as well as working full time. My mother was also a huge support. So were the friends who visited constantly to ensure I didn't get too bored and lonely. As the pregnancy became more obvious it became difficult - it's hard to look pregnant when you're not sure what the outcome will be and when you can't make plans for the future. There were good days when I felt like we were coping surprisingly well and people's kindness seemed to really help, and bad days when the awfulness and uncertainty of the situation seemed overwhelming. I was rescanned every week or two and my blood and urine samples were checked more regularly for signs of infection. At first I couldn't look at the scan on the screen as I found it too difficult, but this got easier as time went on. The staff in the fetal medicine unit were very supportive. Until 23 weeks there was around a centimetre of fluid around the baby, after that there was almost nothing. By this point the fluid was leaking out almost constantly, and I had to wear large pads all the time. At 24 weeks I was admitted to hospital with some bleeding and stomach pains, but nothing seemed to change and I was discharged the next day. Around this point there was a dilemma about when to give me cortisol steroids for the baby's lungs - too soon and there was a risk of giving me repeat doses if I didn't deliver soon afterwards, which could have side effects for the baby's brain, too late and they might not be effective in time. At my 27 week scan I saw a really helpful neonatal consultant, who explained about what would happen after the baby was delivered, how they would try to ventilate it, and who showed me round the neonatal unit along with one of the nurses. She mentioned that if I even felt 'not quite right' I should come in to be checked, as this could often be one of the first signs of preterm labour. Over the next few days, my temperature seemed to get very slightly higher than it had been and I began to feel sluggish. At exactly 28 weeks I went into hospital to be checked out, but when I was examined nothing seemed to have changed. When I got home that evening, I began to feel sharp stomach pains, but went to bed hoping that it was indigestion. At 3am the following morning I woke up and realised the pain was getting worse and that I should go back to hospital. I was admitted to a bed on the postnatal ward where the pains continued and I was given steroids just in time. It was very hard to be surrounded by new babies and visitors at the same time as I was terrified about the prospects for my baby. That evening another neonatal consultant came to see me and said that having looked at my notes she was extremely pessimistic about the prospects for the baby and thought it would be pretty much impossible to ventilate. Early the following morning the pains began to get worse again and I had some light bleeding. I was taken down to the labour ward and monitored and my mother and husband arrived. As the baby had been transverse when I was admitted I had assumed that I would need a C section, but that morning the baby turned round into a breech position. At 10am the obstetric consultant on duty agreed that I was in labour and that the baby would somehow come today. I was taken into theatre but things moved very quickly and half an hour later I delivered the baby breech. Our daughter Alice was born weighing 1.19kg (2lb 10 oz). We were delighted when we found out that she was a girl as we knew that premature girls tend to do better. On the first day she was difficult to ventilate as her lungs were small and stiff, though not as bad as everyone had expected. After a very tough first 48 hours (I don't think I realised later how tough, until one of the doctors told me weeks later that she had been the biggest worry on the unit) she turned a corner and after two days on an oscillating ventilator and two days on a regular ventilator, she moved on to a biphasic machine, and then onto CPAP. We didn't get to hold her until she was a week old. After that she made excellent progress and was transferred out to a local neonatal unit where her progress slowed slightly. She then caught a virus which ended up making her extremely ill, causing her to go into cardiac arrest. She was transferred back to intensive care and ventilated for a further five days, but miraculously seemed to make a full recovery. She has some continuing health problems: chronic lung disease which makes her more vulnerable to viruses and infections, and which means she came home on a small amount of oxygen, but which should stop being a factor after the first year or so; dislocated hips caused either by lack of fluid as she developed or by being delivered breech; a tiny heart murmur caused by a duct which hasn't closed; and multiple haemangiomas which seem to be a problem of prematurity. She is also a smiley, bright, responsive baby, who seems to be hitting her developmental milestones so far. She came home from hospital four weeks after her 18th November due date, just in time for Christmas. We are so grateful for her, and so proud of her.