Success stories of little blessings against the odds
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.
They told us we are one in a million,
we believe with the right care more can follow
Jennie Angus PPROM story
PPROM at 18 weeks gestation delivered at 34weeks
Weighted 4lb 6. Charlie was born on Feb 2015
As Charlie is turning two a week today, his journey into this world is even more on my mind than usual. I may seem to go on and on about #ppromawareness but after going through it with Charlie and suffering PTSD and PND.
I believe it's so vital that more funding and knowledge is raised on PPROM (basically when your waters break early) My gorgeous 'nearly 2' boy is such a fighter and here is why.
During the middle of 2014 I was in the early stages of my pregnancy. I started to get recurrent water infections, leading to frequent hospital stays and a catheter needing to be fitted.
It was during one stay when I was 18 weeks pregnant that my PPROM happened. I remember the day like it was yesterday. The worst day of my life. 21.9.15. Mum was coming to visit that evening. About half n hour before she was due I got up to have a walk. I felt a pop and saw blood. Luckily mum arrived during the midwife and doctors examination. The midwife explained what she could see and that she thought it looked as if my waters had started to go. So immediately I was taken to the delivery suite. 18 weeks is not when you want to be going to the delivery suite!! Next hour or so is a blur but what sticks out is another doctor doing a couple of tests and confirming that it was in fact my waters.
There was nothing they could do. I was put on a morphine drip, made comfortable and given options on how I'd like the baby to be handled once delivered. No resuscitation would be offered at such an early stage. I had to discuss things no mother should ever have to discuss. I remember not wanting to fall asleep even though the drugs were making me sleepy, as I didn't want to wake up and not feel my baby move. Not wanting to miss a second with my baby.
THIS IS WHERE MY CHARLIE BECAME A SUPERHERO! As the midwife (who was great) sat holding my hand I could feel Charlie kicking and moving. He was alive. Despite losing some waters he was maintaining a healthy heartbeat. All night I was monitored. Kept being told 'any moment labour would begin'. I had pains and anxiety through the roof. Two doctors from the Neonatel unit came to discuss why they wouldn't help Charlie once born, I just had to agree to this. BUT... Charlie hung on. By morning I still hadn't gone into labour, Charlie's heart was still beating and he was still moving!
Eventually when my pains had settled I was moved back to the maternity ward to be monitored. The amazing Dr Caric took over my care and put me on a routine of twice weekly scans, blood tests and heartbeat monitoring. Some women, I was told leak waters very slowly or even reseal and pregnancies can be maintained, although it was always going to be touch and go. I WAS FINALLY GIVEN HOPE.
Through the next few week's I spent most of my time in the hospital. I would go for my almost daily checks and be kept in because either Charlie's heartbeat wasn't what they wanted to see, I had another water infection, fluid had dropped, my pains were bad or they thought labour was imminent.
Me and Charlie actually ended up on the labour suite 4 times! Each time he kept fighting! Dr Caric decided to induce my labour once I'd got between 34-36 weeks pregnant as the risk of infections and complications grew and Charlie's chances of survival on the outside were higher.
WE MADE IT! On the 9th February, my labour was induced. Compared to my other two labours it was relatively quick. Induced at 12 pm born at 6.15pm.
My fighter survived nearly 4 months of morphine and various other drugs drips, contractions, water infections and so on!! A little bundle of under 6lb sweetness! He couldn't maintain a healthy temperature so was placed in a warm box and put on a drip in case he had caught an infection. Still, from the dangers I had been warned about this was a breeze!
He was surprising everyone. Breastfeeding great and maintained his temp on day 2! My boy was strong! And since that time he has gone from strength to strength. I was told he may not reach milestones on time as they couldn't predict of any problems had arisen from the medication I was given or from the waters leaking. AGAIN Charlie amazed!
He sat, crawled, walked and talked on time. My little blue eyes bright boy! And now he is about to turn 2!!!
I feel so lucky and proud of him (and all my kids) every day. If I had known about Little Heartbeats at the time of PPROM I know I would have found their support invaluable. That's why I want to raise awareness now. For anyone who is going through it and feels there is no hope. It is such a scary and often lonely place. A lot of babies are lost to PPROM but many survive. It's these stories of hope that Mums can try to cling on to. Little Heartbeats offer many different types of support. One of my faves is a teddy bear with the sound of your baby's heartbeat inside. To listen and give hope. Information booklets too that explain all the 'doctor speak' that you can be bombarded with. They are amazing and women need to know they exist. #WhereThereAreHeartbeatsThereisHope