Sophie story of PPROM
PPROM at 18 weeks and 5 days pregnant
Throughout our experience with PPROM the Little Heart Beats website kept me going. Not a day went by when I didn’t read all the stories of success, these allowed me to hope that one day a picture of our child and our story would also be on the site. Doing the same for someone in our situation.
I had a miscarriage at 7 weeks 2 months before this pregnancy so I was very conscious of eating well and doing the best for our little baby. Therefore on the 15th November when I had some strange discharge I went straight to hospital to be checked over. I was seen by a nurse who told me I probably had a Urinary Tract Infection, they took some bloods and told me not to worry. Feeling more confident I went home and thought it was very normal as many friends had had UTI’s when pregnant, I therefore went back to work and carried on.
Still feeling very uneasy the next day my husband Mike persuaded me to take a few days off work to regroup and not worry. Then our world collapsed, on the 17th November I was talking to my parents who had come to see me to cheer me up and I started to leak water. Thinking this was a probably just a side effect of pregnancy I didn’t mention it to anyone, and my parents left none the wiser what was about to happen. The leaking carried on, I realised it was not normal. Luckily Mike was home and took me to the hospital. On arriving at Milton Keynes hospital, I waited for 5 hours to be seen by a registrar, having been reassured by the midwives that it was probably a side effect of the UTI they thought I had earlier on in the week. I then started bleeding, everything happened so very quickly. The registrar did a speculum and I was taken straight to have a scan to double check that what the registrar had seen was correct. I had lost all the amniotic fluid around my baby and we were given the news that I was likely to give birth within the next 72hours. We were taken from the Maternity Assessment Unit and put in the bereavement room and told to wait for the inevitable. I was 18 weeks and 5 days pregnant, we were told they could do nothing for our baby as it was before viability and he/she would not survive. We spent the weekend in the bereavement room at Milton Keynes MAU.
Luckily for us a consultant from the foetal medicine unit at the John Radcliffe had started to do clinics every Monday at Milton Keynes. He was able to squeeze us in to talk to us about the possible outcomes. He scanned me again and confirmed that my waters had broken and the probabilities he gave were 10% healthy baby, 20% our baby would have a lifelong disability and 70% chance that our baby would not survive. He said as the weeks went on our probabilities would change for the better. The earlier you give birth the more likely you are to have a child with severe Cerebral Palsy. He offered us the option to terminate our pregnancy, this would remain a possibility up till 24 weeks. He would see us again in 2 weeks, if I was still pregnant and talk through the options again. Having been sent Little Heart Beats and having done lots of research we went home and I self-prescribed bed rest. This was the start of the longest weeks of my life. The only times I left my bed/sofa was to go to the hospital for a blood test every 3 days, or to go to the loo or shower. There was a hole in my amniotic sac, every time I stood up or moved I lost more water, I tried to drink as much as I possibly could in order for the baby to take on as much fluid as possible as it would in turn increase the amniotic fluid around the baby.
Not having any amniotic fluid means it’s very hard for a baby’s lungs to develop properly, the liquid around the baby is taken in by the baby in a normal pregnancy and imitates breathing allowing for the lungs to grow and be ready to take in oxygen when they are born. Our biggest fear was that the lung development would not happen. There is also no way for any scan to show the development of the lungs. The development of the lungs happens between 12 weeks and 24 weeks in pregnancy. We were given the stats of 50% chance your baby will be able to breathe, and 50% you baby will not be able to breathe if he or she would get past 24 weeks. Bearing in mind that of the 50% chance that they would be able to breathe it was going to have to be assisted breathing to begin with and potentially for a long time after birth.
We were told to take things day by day, with the aim to get to 36 weeks when our baby would be delivered. In an added complication our child was in a breeched position and unlikely to turn as no waters to help it do so.
We were told that little girls have a better chance if they are born premature as they are stronger and more determined. We therefore found out the sex and luckily and excitingly for us we were told that we were having a little girl.
Eighteen weeks to twenty-four weeks were a long gruelling slog but we made it. We were offered to go to the John Radcliffe hospital in Oxford where the consultant was based and where they had 18 Special Care Baby Unit beds. We were lucky enough to have friends in the area who kindly let us stay with them near to the hospital. At 24 weeks I was also offered steroids which helps a baby’s lung development, this was given to me just before Christmas.
On Christmas day I was again playing scrabble with Mike when my head and stomach started pounding, we rushed into hospital and I was admitted as my white blood cell count was high which indicated that I had an infection. The main reason that she would have to delivered would be if she or I contracted an infection which was a high possibility without her waters to protect her. I was discharged after 48hrs in hospital and told to go back home and keep going as before.
Taking everything day by day and just wishing for more weeks to pass. Then at 26 weeks I started to bleed again, we went back into hospital, I was admitted until I was 48hrs without bleeding. In the middle of the night I was rushed down to the Labour ward as the bleeding had become very heavy and the midwives were convinced, I was about to give birth. I was seen by a different consultant who said she was sure that I would be giving birth in the next 24hrs. We remained in the Labour ward overnight and nothing happened, although uncomfortable our little girl wasn’t going anywhere. Luckily for me our consultant was doing the ward rounds and made me feel happy enough to go home again. This then became the norm for the next 2 months, being admitted for a 2-week stints and sent back home and then back again for 3-week stint. In this time Mike was amazing and came in every day to see me sometimes twice a day. I know I would not have been able to do it without his constant support and dedication.
When one is in hospital for such long periods of time you become institutionalised, I looked forward to being put on the CTG machine. Longing to hear our little girls’ heartbeat. When you are in the wards your vitals are taken ever 4 hours so interrupted sleeps at night, but I was happy to be there as I knew we were in a safe place. (What I didn’t know was this was an introduction to motherhood would be like.) Luckily I was encouraged to go back home to where we were staying by the midwifes and consultants on the ward as it can be very tough on a daily basis seeing other mothers come in and then go home with their babies, having no idea what was in store for us.
At 30 weeks I was again rushed into hospital as my heart rate was elevated, when I arrived at hospital I fainted and was given a drip to keep me going. Although I didn’t realise this would be the last time I would be in the MAU. I had been in so often I knew most of the midwives, who now knew my story and knew I needed to be admitted quickly. Often you can wait for hours to be seen. I had been told by our Consultant not to let any doctor use a speculum unless they could give me good reason as to why they were doing so, as it could introduce an infection. He also said that the junior doctors should speak with a consultant before doing anything to me.
Four weeks, came and went although slowly, taking every day at a time, the longer I was pregnant the better our little daughters odds became. We made it to 34 weeks, our initial conversation with the registrar in Milton Keynes seemed a very distant memory, and every new doctor and midwife we saw said how amazed they were that I was still pregnant. We had planned that if I was still pregnant I would have a C Section at 36 weeks and 6 days.
At 33 weeks and 5 days a Friday I started to get really bad cramps which was thought to be Braxton Hicks. For the first time I was given paracetamol and the cramps came and went in about 3 hours. I was told It was normal to get these, so I was not too anxious. Saturday came and went, nothing happened, so I settled back into hospital life. On Sunday night Mike came and spent the day with me, he was about to go home but popped out to get me some dinner before he left. The cramps started again but this time much worse and closer together. Having not been pregnant before I didn’t realise that these were contractions. The cramps came at night, the midwives I knew where off duty and the midwives on the nightshift I had not met. They put me on the CTG machine and our little girls heart beat was normal and according to the CTG machine I was not having any contractions, I was told I was not in Labour. I asked to stay on the machine as I felt very uncomfortable and was in a lot of pain. I wanted to make sure our baby was ok and her little heartbeat kept me going. I was on the machine for 3 hours with no sign of any contractions. When you don’t have any amniotic fluid, the CTG machine can’t pick up the contractions. I remember there was a lady in labour next to me, her contractions could be seen very clearly on the monitor and she didn’t seem to be in half as much pain as I was. Eventually we persuaded the midwifes to take me down to the Labour ward.
Luckily for me the Registrar on night shift had seen me twice before in the labour ward and could see I was in a lot of pain. We also knew that it was finally time to use the speculum we had been so cautious we hadn’t used before. Then things suddenly materialised very quickly as the registrar could see our daughters head. I was fully dilated and about to give birth, as our little girl was breach this would not be ideal. I was prepped for the operating theatre very quickly and within 45 minutes of being taken down to the delivery ward, I was having an emergency c section. Seventeen weeks of lying flat and doing nothing but hoping our daughter would stay inside me as long as possible was about to come to an end. The only thing that went through my mind was will she be able to breathe.
Anouk was born on 4th March at 11.45pm, she came out crying, which was such a relief and Mike was able to cut the umbilical cord. Then suddenly the breathing stopped before I could lay eyes on my daughter she was taken out of the room and to the Special Care Baby Unit. I was then taken back to the delivery ward, where we were told they would not be able to tell us any news of our daughter for 4 hours whilst the team of paediatricians did their best to keep her alive. If I had thought 17 weeks was a long time to wait, it was nothing compared to those 4 hours as we waited to hear whether or not Anouk was going to make it.
After four hours which felt like an eternity, the midwife came to tell us that Anouk was doing as well as could be expected she was in an incubator with a ventilator in her lungs which was assisting her breathing. She had also been given Serofactin to help lubricate her lungs. As much as I tried to prove to the midwives, I was capable of getting into a wheel chair to see her, they would not allow me, Mike went on his own to meet out little girl. We had been told by the paediatricians before Anouk was born that if she made it, she was likely to be in SCUBU until her due date so we were prepared for the 6 weeks if not more ahead. One of the paediatricians told us the day after she was born that they were sure she had a syndrome due to the shape of her eyes and the height of her ears. They had taken her bloods and where going to let us know in 3 weeks if this was so which they were sure it was. We had done the Down Syndrome test earlier on in my pregnancy, which had come back with a 1 in 10,000 chance, as the doctor said there is always 1 in 10,000.
Anouk surpassed all expectations and was taken off her ventilator and was able to breathe on her own after only 2 days. She had severe jaundice, which seemed to improve quickly. I was very thankful to be given a room in the hospital so I could go and see her whenever I wanted, but could also go to sleep as well as pump milk so that the wonderful nurses could feed her through a tube. On day 3 Anouk moved to the Low Dependency unit and bypassed the High Dependency which was very surprising and rare. We spent 10 days there, the nurses helped me to feed Anouk with a tube. On day 6 she was ready to try breast feeding and latched on quickly. We still had to tube feed her as well as she didn’t have the strength to be fully breast fed. We were seen by the top paediatric cardiac consultant and were told she had a hole in her heart as well as having a bicuspid aortic valve. He was incredibly kind and told us he was sure that this would sort itself out and to come back in 3 months. We were also booked into the orthopaedic unit to check her hips. All premature babies have this check as do breach babies so we ticked every box for her hips to be immature. She was ready to go home on the 16th March after being in Hospital for 12 days. Completely off oxygen and fully breast fed.
Anouk’s hips were immature and therefore she needed to wear braces for 12 weeks. We were only allowed to take her out of the braces every 3 days for 20 minutes. The braces although looked incredibly old fashioned did the trick and her hips after the 12 weeks were within the normal range. We were also given the all clear for any type of Syndrome when the blood test came back from the hospital. We went back for an ultra sound on her heart, the hole had filled itself and her heart showed that she had a tricuspid aortic valve and had a very healthy heart.
Our little miracle girl had made it!
We were given the option to terminate our pregnancy, 5 months later we were holding our healthy baby at home in our arms. We wouldn’t be here today without the amazing staff at the John Radcliffe hospital in Oxford, especially the consultant that met us in Milton Keynes and the Neonatal teams that ensured Anouk’s safety on her arrival. Without them, Mike and I know Anouk wouldn’t be here today.
We are very lucky to live in the UK and have the support of the incredible NHS.
Anouk is now
15 months old and has no developmental delays and is a very happy and healthy baby.