Weʼve raised £1,450 to supplies for NICU at the heath hospital, SCIPS and Little Heartbeats PPROM advice and support
- Porthcawl, Bridgend, South Wales
- Funded on Friday, 20th December 2019
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.
The page owner is responsible for the distribution of funds raised.
Firstly a huge thank you for even opening this justgiving page. I now there are a lot of these all asking for different things and working hard for very good charities/ causes and families.
You'll be grateful to hear that we are not sharing to guilt people into donating (but we would be very grateful if you felt like you wanted to help any of the charities listed above and below) but mainly to share our story. It is a taboo subject and this is something that is pushing me right out of my comfort zone (if you know me well you will know that I'm a blender and not a limelight girl, socially awkward and definitely not one to show my vulnerability/ feelings in public). This being said if I can share this story and raise awareness that could possible help one person/ family then I will have stepped out of my comfort zone for a very good reason.
Our story started months ago with a missed miscarriage in October which was very long winded and ended in a D & C after two failed medical managements...this is a different story!!! Following this we were very lucky to discover that we were pregnant again before Christmas. Unfortunately for us on New Years Eve things started to change and I started to bleed (just like last time!!) Somehow the baby was OK and following 3 scans in EPAU (where we were told "you can have a scan but there's nothing we can do anyway" and "you've had 2 scans which are fine you need to go home and chill"...maybe an unfortunate choice of words when you are speaking to someone who is a nervous wreck). Anyway, we made it to 12 weeks which we were told lowered the risks of miscarriage...Great news we thought!
At 15 weeks everything had settled and seemed to be going the way it should. We were getting slowly more confident but still not confident enough to share our news and managed to hide it...even from Noah. The weeks continued to pass and we were getting a bit excited THEN we were given a curveball....my waters broke. YES you read right at 18 weeks my waters broke!
This is what I now know is called PPROM (Preterm Premature Rupture of Membranes). Basically your waters break leaving no fluid around the baby. We went into hospital 3 times over the space of 4 days. Each time we were sent home and told to wait until our 20 week scan, we were even told it can't be your waters it's too early. Desperately we went to a different hospital on the 5th day to be told it was definitely my waters..diagnosed PPROM...given antibiotics...told to organise a care plan at our hospital with a consultant. Turns out this only happens in 1-4% of pregnancies and that there was a 90% chance that I would go into labour in the next 96 hours (At this point I'm 18+5 and told I'm better off labouring at home as I don't come under maternity until 20 weeks and there won't be any available beds on the gynecology ward. I can go to A&E but will have to wait or will be put in a side room and will probably have a medical staff member there ... Jeeeze thanks!). Needless to say the meeting with the consultant wasn't reassuring or helpful (but I'm not here to complain, although we are following a complaints procedure to give advisory feedback - if you are ever in this position please do the same - if we don't let them know what is wrong things will never change!) At 24 weeks we requested to see another consultant (this one was very good) we were told that the baby had no chance of survival, I was at very high risk of developing Sepsis myself, even if the baby survived it would be disabled or have some sort of deformity. We were given the option of a termination or in the medical world a feticide (which is as unpleasant as it sounds). We had a lot of talking to do and had to come to a decision together...we knew whichever decision we made it was going to be difficult. We decided to continue with the pregnancy as every scan that we had showed a normal baby with normal growth the only thing that was visibly wrong with our scans was that there was minimal fluid almost none. The fluid levels varied from week to week from 0.6cm to 5.2 cm. The baby needs the fluid to practice breathing and develop the lungs ... this was where the problem lied - as my waters broke so early we had no idea what the lung development would be like or even if the lungs had developed at all. BUT as there were no obvious problems from week to week and growth continued as it should we knew we had a little fighter and we decided that we would continue to fight as well. (Information if you or anyone you know experience this you should be given weekly scans, weekly bloods to check for infection and weekly swabs).
On the 9th of May (My birthday) things took bit of a turn and I started to bleed. By this point I had already received steroids to help the lungs to develop a little. The bleeding gradually got worse through the day so they decided to transfer us to the Heath. Luckily I was given antibiotics and everything seemed to calm down. We stayed at the Heath for the next 5 weeks where everything was relatively settled but it was seen too dangerous for us to return home so far from a specialist hospital as we were at risk of fast labour and cord prolapse (which is a problem in itself). On the 06/06/2019 we reached 28+6 when I eventually went into full blown labour (following a few days of on/ off tightenings and cramps). Labour was pretty quick as I was sat talking to a friend at 12 midday and within 2 hours was having very obvious cramps and was put on the Sepsis treatment pathway. I was given another course of steroids for babies lungs and magnesium sulfate for neurological development. Due to infection a c-section was planned and I was wheeled to theater (in agony) and at 6:56pm when I was just about to have a spinal our baby girl arrived naturally and as bit of a shock requiring the crash button to be pressed and a big panic. Our little girl Eliza Bronwen Bartley was born weighting 2lb 6oz and was stabilised in theater and taken straight up to NICU (Neonatal Intensive Care Unit). I was stuck in theater as I had a retained placenta which required a spinal for manual removal anyway. We finally got to see Eliza at 3am and she was perfect no deformities in sight. We were told that she was stable but it was very touch and go. She made it through the night and the next day. She was taken off the oscillator and put on a ventilator (although this doesn't sound good it was a baby step in the right direction) That night things took a turn for the worst and we were called in. She somehow seemed to improve but the afternoon of Saturday 08/06/2019 things took a very bad turn. We had to say Nos da to our beautiful girl. As hard as it was we and her grandparents had some time with her. How precious this time was! We were very lucky to have some fantastic NICU staff and an amazing friend to guide us through the most difficult time of our lives. They made the most difficult situation a memorable and very precious time that we will be forever grateful for.
This is our story and although it didn't end the way we and many others wished there are situations where people have had the miracle of a healthy baby. This is what we learnt from our time following the Little Heartbeats PPROM Advice and Awareness charity which was an absolute saviour. It helped us know what care we should be expecting, what we should be doing and that we had a chance as long as there was a heartbeat.
This said the only reason we got through these weeks of unknown and stress was due to our absolutely amazing family and friends. We had a continuous flow of messages, love, well-wishes and visits from everyone and for this we will be forever grateful and never able to repay what they have given us. This was evident in the turnout for the funeral. Our little girl was so loved even though she never met them.
Anyway I hope I have raised some awareness of PPROM and what to do should you or anyone you know be unfortunate enough to experience it during your pregnancy (I honestly hope none of you do and that is my biggest wish). If you do know of anyone please feel free to pass on my contact details as I would be more than happy to help if I could.
We have had a long and tough fight on our hands and unfortunately the fight for us was a little too much. We would love to raise as much money as possible to support and help research into why people's waters break so early and help ease the pain for others. Eliza was a little fighter and we want to continue the fight for other families!!
Thank you for everything - please feel free to donate/ not donate ... all we ask is that you remember this story and if anyone you know experiences this support, guide them, point them in my direction and definitely to the Little Heartbeats PPROM advice and awareness charity.
Love to you all from the Bartley family xxxxxxxx
Updates appear here
Sarah-Jayne Bartley started crowdfunding
Leave a message of support
Keith & Carole Harries
Sep 14, 2019
Congratulations both on your achievement.
Sep 14, 2019
Well done I did 3 k this morning and it hurts!
Sep 2, 2019
Good luck to you all
Sep 1, 2019
Well done. Know the aches and pains in more ways than one.
Aug 29, 2019
Hope this helps to reach your target.
Aug 27, 2019
So sorry for your loss. Thoughts are with you all. Im sure you Treasure the precious times you had together.
Aug 18, 2019
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About the fundraiser
Porthcawl, Bridgend, South Wales
I am Sarah-Jayne - Wife to Stuart, mum to a 3 and half year old Noah and our little star baby Eliza. We have had a difficult year and I'm stepping out of my comfort zone to share our story. Eliza isn't a visible member of our family but is definitely a part of our family.