Rachel's story

PPROM Suspected at 18 weeks 5 days, Oliver Johnson born at 34 weeks  

Born in the UK in August 2015

Birth, went into labour and had emergency section as Oliver was breech

My waters broke in the 18th week of my pregnancy, on the 21 May 2015.  Initially told it was normal discharge and nothing to worry about, it was only picked up at the 20 week scan by the sonographer.  We still didn’t know how serious this was though until we reached maternity triage and the doctors and midwives treated us like we had already lost our baby.  When after my examination we were shown into a private room away from all other patients we knew this was really bad. I was informed that most people give birth within 48 hours of their waters going, the majority of the remainder only last a week. In the unlikely event we made it past viability our baby would most likely have lung hypoplasia (quite probably too severe to sustain life), limb deformities, additional issues relating to (extreme) prematurity, and we were both at risk of developing infection. The consultant told me our only hope was a miracle. 

After a night on the delivery ward I was sent home to await the inevitable.  I entered a parallel world of late miscarriage, micropreemies and the limits of life. I did my best to remain hopeful while attempting to prepare for the impossible, locating the resources I hoped we would never need, thinking about what memories and mementos I needed to collect if we lost him before or shortly after birth. I bought him a cuddly sheep. This was really important. I wanted him to have a toy, something of his own. 

And somehow minutes became hours, hours became days. Each day seemed to last forever and I couldn’t imagine ever getting through a week, but we did. Twice-weekly monitoring visits to the hospital interrupted a schedule of mostly lying down.  The consultant had said bedrest would make no difference, but I found the more I moved the more I leaked, so inevitably I avoided moving. I read someone else’s account of how they just wanted to be a giant womb collecting water and I thought – yes, that’s me. 

Days became weeks, then the magical week 24 – viability. The point at which if I went into labour the doctors would try to save our baby. I had a round of steroids, then went back to lying down. 

And then just as this was becoming my new normal, finding my routine of resting and monitoring, our complications sprung complications and I gained even more new vocabulary. I began bleeding heavily around 26 weeks, and while an inpatient for this a routine scan showed the baby had a pericardial effusion and we were sent to the specialist hospital for an urgent fetal cardiac scan. The consultant was very difficult to read – she took her time scanning but spent very little time measuring baby’s heart, which I wasn’t sure was a good sign or just meant she had found a bad thing really quickly. Thankfully his heart looked normal, in fact everything looked normal apart from the low fluid, and she reiterated that the big issue remained his lung development. She only gave us a 5–10% chance of him surviving even if we made it to 34 weeks. 

We went back to carrying on. I leaked constantly, then began to bleed constantly, finding myself admitted as an inpatient around 30 weeks then kept in for the duration, however much longer that would be. The bleeding went hand in hand with uterine irritability, which on a few occasions worried the doctors that I might be going into labour, leading to trips between the ward and the delivery suite, but our baby was determined to stay put.  The baby remained stubbornly breech so the plan was for a section at 34+5 (to put it at the beginning of a week, not just before a bank holiday), if we made it that far. The closer we got, the less I could ignore the fact that we would not know until he was born if his lungs had developed enough to sustain life. 

At 34 weeks exactly I went into labour. More than 15 weeks (107 days to be precise) since my waters broke. 38 days as an inpatient. All that waiting, and he still arrived in a hurry. I had been having regular contractions for weeks, since the previous Friday they had been about every 5 minutes, on the Monday they were severe enough the doctor thought I was in labour but I wasn’t. At some point though, it developed from uterine iritability to pre-labour and all of a sudden in the early hours of the morning of the first day of the 34th week I was contracting every three minutes. The midwife gave me paracetamol and told me to call if it wasn’t better in half an hour. It wasn’t, I was whisked down to delivery to be checked, where it was discovered in a panic that in the space of an hour I had become fully dilated. I was given strict instructions not to push and prepared for a section. This was it – I had done as much as I could – it was time to let him out into the world and hope beyond hope he was strong enough to make it. 

Baby Oliver was born angry and purple and screaming weighing a very respectable 5 lb 4.  He did have the lungs of a younger baby so had been ventilated to be given surfactant therapy, but he was only on the vent for 24 hours, spent 12 hours on c-pap, 12 hours on bi-pap then was on room air. He was jaundiced but apart from that was mostly a ‘feeder and grower’, moving from ICU/HDU to SCBU, from incubator to cot, from tube feeds to breast and bottle. He did remarkably well and after 19 days we were able to take him home. 

His first year has had its challenges. Oliver suffered badly with winter viruses, including a bout of RSV which put him back in intensive care for three weeks, and he has subsequently been diagnosed with Chronic Lung Disease / a degree of pulmonary hypoplasia. In practice this doesn't affect his day-to-day life, he just needs a bit of extra help when he is unwell, and he is expected to grow out of CLD over the next few years. He had prolonged jaundice and unusual thyroid numbers for a few months but these are now resolved. He has also been diagnosed with hip dysplasia and his left hip is dislocated - a combination of being breech and having no fluid - but this is relatively routine and fixable with an operation which he will have at around 18 months. We also had a long wait for genetic test results but thankfully these have come back with no cause for concern. 

We are so very aware we are among the lucky ones. He is growing well at last, moving up the percentiles, happy, smiling, interested in the world, enjoying exploring his food and toys and what his body can do. He has a giant grin and a big Tintin quiff. He smiles at everyone and is never happier than when out and about being sociable. I do find I am constantly wondering what the next challenge will be, and every time he gets a cold (which has been fortnightly since April) I worry how bad it is going to get this time, but every day I also count my blessings that we get to keep him.