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Stories of Hope - September Pprom Awareness Month

Nadia"s story

I was sitting on the sofa with my partner watching telly when i felt a gush of water below. At first I put it down to pressure on my bladder as I was pregnant maybe causing me to leak.

My partner and I went for my 20 weeks scan the next day and were so excited to find out the gender of our baby. The sonographer's face changed and said that he needed to get his colleague. They confirmed that there was no fluid around the baby and could not take any accurate measurements and no gender reveal because of such poor vision, due to no fluid. We were mortfied.

We were referred to a fetal medicine unit in Wrexham to have a detailed scan, at the scan we were given the bad news that our baby was small for dates had a small femur and small skull. The doctors were concerned about baby’s underdeveloped lungs, possibly long term neurodisability and could have limb abnormalities due to no fluid. This scan was the worst day of our life, my partner and I were totally devastated. I don’t think we have ever cried so much. I had PPROM (Preterm Premature rupture of memberanes) at 20 weeks- it is a breakage of the amniotic fluid sac before pregnancy. I also had heavy bleeding in early pregnancy and I have bicornuate uterus, this might be the cause of PPROM but they couldn’t give me a direct answer. We were given devastating news that I would most likely to deliver in the next 24-48 hours and told to prepare for losing our baby girl. But she stayed safe in my tummy.

We were offered to have a termination due to the risk of sepsis and as baby wasn’t growing at normal rate. Baby’s chance of survival was 0% due to her lungs not developing properly without the fluid. The hardest part was feeling my baby kicking and moving. If I went into labour before 24 weeks at least we know we had done everything. If I went past viability after 24 weeks, they will consider resuscitation but the chances of survival are slim.

I refused to have a termination and said as long as there is a heartbeat I'm fighting for my little girl and if I can get to 24 weeks I would stand a better chance and will receive steroid injections to help speed up the baby’s lungs development and might gain fluid when she gets bigger and block the leak.

They sent me home on oral antibiotics to prevent infections and to wait for nature to take it’s course. I was so crushed and devastated. I found a non-profit organisation support group on Facebook called 'Little heartbeats- Making PPROM Awareness '. Little Heartbeats is a wonderful support non-profit organisation, run by the most amazing woman, who has experienced PPROM. After her loss of her baby in 2010 she helps others who are experiencing their own PPROM journey. I was stunned to read about some babies had survived with little or no fluid. They had so much advice and many stories. I know not all babies will survive PPROM. I received a free support pack in the post with valuable packs of information of PPROM and a teddy bear that we could record our baby’s heartbeat and put it inside the teddy for a keepsake in case we lost her too soon. This helped me prepare for the fight ahead. Little heartbeats recommends to bed rest and drink lots of water so I’ve put myself on bed rest and drank tons of water hoping the sac would reseal. I only got up for showers, go to toilet and attend my hospital appointments. My leaking would become much heavier the more I moved. I couldn’t walk without the feeling like I was peeing all over myself and I get really upset every time when I leak. I felt like I was failing my baby. I felt torn and broken. I had some very dark days and I planned a baby funeral in my head. I really mourned the loss of a ‘normal pregnancy’. I was so sad that I missed out on baby shower and still struggle when I see my friends post photos of their baby showers and gender reveal. I was terrified to buy baby stuff thinking that she may not survive. My partner was so supportive and looked after me.

We could not believe that we have made it to 24 weeks. Each week feels like a milestone. I had gained a little fluid up to 2-3cm as the baby was producing fluids at 24 weeks. I’ve lost my mucus plug a couple of times and never went into labour!

I received steroid injections and had weekly Doppler/ growth US scans. She was growing a little but not as much. The fluid was still low. I had blood tests twice a week to check CRP levels (infection marker) and had vaginal swab once a week to check infections due to my waters have been broken for so long. I have a Strep B ,most pregnant women who carry group B streptococcus (GBS) bacteria have healthy babies but there is a small risk that GBS can pass to the baby during childbirth and can cause serious complications that can be life threatening. It is not routine tested for but may be found during tests such as urine test or vaginal swabs.

When the coronavirus came and my partner wasn’t allowed to come with me to attend scans, appointments and visiting me in hospital which was awful thing to go through on my own . Not having my partner on my side was distraught for me.

I didn’t have a bump till 28 weeks and I felt like I was proper pregnant. I started to noticed that my leaking was getting less. I had a detailed scan at 28 weeks- 8 weeks since my waters broke and lots of hospital appointments later my membranes seemed to have resealed but I was still leaking a little fluid. We also found out the gender of our baby and she was growing at normal rate. The consultant was amazed how much things had improved but still wasn’t sure how strong her lungs will be when she is born. My fluid has increased to 6.9cm and the goal is to try and keep my little girl in till 34 weeks. We were so happy to hear better news and was proud of myself that I didn’t give up on her.

Since I’ve resealed , I caught E. coli, strep A and early onset sepsis at 32 weeks even though I didn’t have any symptoms. I was admitted in hospital for a while and was treated with IV antibiotics drip. Sometimes with infection they want to deliver baby out earlier. I didn’t need to deliver thankfully. The doctors were weighing the pros and cons on whether to deliver at 34 weeks or 35/36 weeks. The baby’s movements and monitoring were good.

The scans showed that I had polyhydraminos (too much amniotic fluid) I could not believe that I had no fluid at first and then I had too much fluid! The doctors were baffled.

Unfortunately I caught an infection again and had to deliver by emergency c section at 36+4 weeks. Our miracle Mia was born on 5/6/20 at 15:39 weighing 5lbs 12oz and defied the odds! After being given a very poor chance of survival or a high risk of major complications. She came out crying. She didn’t even need a NICU stay and only stayed in hospital for a week due to jaundice and was under phototherapy. Words can’t even describe how much she has amazed me and how proud I am. It’s hard to believe sometimes that if I took the advice from doctors when my waters broke at 20 weeks and had a termination she wouldn’t be here. Where there is a heartbeat there is really is hope!

It was a very traumatic pregnancy but it was all worth it in the end. I still have post traumatic stress about the whole experience but today I have a beautiful , happy and healthy daughter with no issues.

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Jessica:s story of hope

Pprom at 13 weeks

So November 2019 was when I first found out I was pregnant with my first baby and wow I was so happy and so excited! Me and my partner had been trying for a baby all year and this was our last chance to try for a couple of years basically - so we felt incredibly lucky! So at this point I was only around 2-3 weeks pregnant so very early stages! It was such an exciting time for us, talking everything baby and planning for our next adventure and I was excited to just experience pregnancy! I’d always dreamed of being a Mum and I just felt blessed.

A few weeks later we had a scare - I had a bleed and after being scanned and checked I was told that I had miscarried and to return a week later.

So I spent a week grieving a baby I thought I was going to have and I didn’t know how I could love something so much already but I did. I was lost. So a week later - baby still had a heart beat! It turned out that I just had a bit of bruising that was causing the bleed. So after this scare and anxious time we continued our what we now thought would be a normal pregnancy!

We enjoyed Christmas as a family and I was getting excited to go to my 12 week scan in the January 2020 (I actually was 13 weeks pregnant at my appointment). So the countdown was on and my appointment finally came around!

We were going to find out when our sweet baby was due! I think I sat with a constant smile on my face in the waiting room with excitement to see my baby!

We were called in and the sonographer started to scan and she just didn’t speak. I looked at the screen and I just couldn’t make anything out so I was really confused as surely I should see something that looks like a baby surely? The sonographer told us to wait there whilst she gets a second opinion on something and at this point I just thought nothing of it at all! Before I know it midwives from fetal medicine came in quickly to scan me as well and then asked us to wait in their office for a chat.

They explained that there was 0 fluid around my baby and that this isn’t good. I didn’t realise how serious this was and I had never heard of this before.

They explained that termination was the only real option in this situation as it was impossible for a baby to grow and develop with little to no fluid. I was absolutely heartbroken and broke down in there. We had to go home with this massive decision of whether to continue or not, we were told if we continue then the baby will most likely pass away in the womb later down the line.

The next few weeks are a bit of a blur to me - I was in a bit of a bad place not knowing what to do. This is when I found hope and found Little Heartbeats and saw that babies can survive PPROM! And this gave me the strength and determination to carry on with my pregnancy.

I PPROM at around 13 weeks and was given until week 20 to make a decision on my baby’s life. And I decided to continue. As much to my consultant at the time disagreement.

Every week was hard. Physically and mentally however I tried to stay positive the whole time and genuinely kept telling myself that everything was going to be okay! I was monitored weekly at the hospital for swabs, blood tests and scans to keep a close eye on things and this became my life for the next 19 weeks! I think one of the weeks the most fluid I had was 2.6cm but this changed every week and most weeks I had 0 amount of fluid which was really disheartening. We got to 32 weeks which then things started to happen! I was getting contractions which I kept being told was Braxton hicks but just felt too intense! So after being checked over it turns out I was 3cm dilated! So it was straight to the labour ward. At this point I was given the steroid shots and also a course of magnesium and anti biotics!

Things slowed down and after several blood tests my infection markers were significantly raising so all of a sudden after being on the hormone drip for 5 hours trying to labour naturally doctors came rushing in saying they needed to get me into theatre for an emergency c section ASAP as the infection is getting worse and they didn’t want it to pass to the baby. I was in absolute shock and was so scared. In fact I don’t think I’ve ever been so scared in my life. So In we went... and for some reason I asked for some music to be played... Mamma Mia!

No idea why I even asked for this but I blame the drugs they had me on! It did lighten the mood slightly! So the c section was an experience all on its own but I just kept thinking I need to stay awake...I need to know my baby is alive. It was the longest however long I was in there and the panic was really kicking in. And then the doctor came around the sheet with my baby. My beautiful baby boy Charlie who was alive! They brought him to me and he was just so small and I looked at him and thought this whole battle was worth it to see him! I gave him a kiss on his head and then I had to be put under Anaesthetic as I wasn’t coping well at all!

The next morning I got to go and meet my boy. I was so sore, and was hurting from the procedure but that wasn’t going to stop me seeing my baby. I was taken to the NICU and as I was wheeled in on a wheelchair I saw him in the incubator and I just cried. I couldn’t believe that I was there looking at my baby!

The doctor was there and he literally said he can’t believe how well Charlie is. That there is no obvious health conditions that they have found after scanning him and doing tests etc.

He did need help with oxygen as his lungs were a little underdeveloped but that is the only support he needed in the NICU, that and to just grow!

Charlie weighed 3lb and 4 ounces and was born at 32 weeks on May 21st 2020 at 12:50am.

The day my world was made complete. The day I realised that I fought through this journey and it was all completely worth it! The odds were always against us it seemed but in fact Charlie did it. He is a miracle. He is now 3 and half months old actual and 2 months corrected and he is doing simply amazing. He spend 8 and half weeks in the NICU and then we finally got to bring him home. He is on a small amount of oxygen still however is monitored weekly and has a sleep study this week (September 2020) to hopefully get him off the oxygen! The NICU journey was also a difficult and it’s own experience but this story of PPROM is a success story and Charlie is an absolute miracle baby and I hope that his story can give hope and reassurance to other families out there going through PPROM.

No one will ever understand how hard it is unless they’re faced with it and I absolutely honour all families out there going through it. It’s been the most hardest thing I’ve ever had to go through especially during a pandemic.

There is always hope if you hold onto it and follow your heart.


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