Name: Ciara  Curran

Organisation: Little Heartbeats

Award Category: UK Support Organisation

Sponsored By:

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My Plea:

Who we are and what do we do?

Here at Little Heartbeats we are all mothers, fathers, and families who have first-hand experience of dealing with PPROM on a personal level and those experiences differ across the board.

We support pregnant mothers through their PPROM journeys throughout the UK and internationally. We have worked hard to fundraise in order to pay for and send PPROM information packs to pregnant mothers dealing with PPROM when requested.

• We have built a source of information and support. We also work on improving the general awareness of this pregnancy-related condition.
• And finally provide a platform from which to voice an opinion based on real experience as to how the medical professionals involved in childbirth might improve their understanding, treatment and care of PPROM patients

When our mums are prior to 24 weeks

When this happens during pregnancy many women are told that termination of their pregnancy is their only option. As a mother how do you comprehend this when your already loved baby’s heart is still beating happily inside your bump? There is hope and our mission at Little Heartbeats is to promote awareness of this condition and share the hope that babies can survive. They can go on to live full, happy lives. There is hope.

At 15 weeks my waters broke! Terrified as a first-time mother I was guided by the doctors, they told me there was no hope. I agreed to “medical management” thinking it was a wait and see approach. No one helped me understand the situation I was in. I was scared! I was never told we had “PPROM,” so I Googled my symptoms and found Little Heartbeats!’
‘He told us our baby wouldn’t survive. That we should go home and expect to miscarry in the coming days… Our son didn’t pass away after a couple of days. He battled on for 7 weeks without any waters at all.’
This is our motto here at Little Heartbeats, and it’s one we pride ourselves on.
‘WHERE THERE ARE HEARTBEATS, THERE IS HOPE!’
We also have supported families who have opted to induce their pregnancy, and support is so vital, because they go through a baby loss and we respect any mother who has decided on this route.

When our mums PPROM after 24 weeks

Mums know that waters shouldn’t break before 37 weeks of pregnancy and if it does it is a serious condition that requires management. There is very little information given to these families. Guidelines recommend delivery at 34 weeks, some women are informed of this, but sadly not all. Tragically, this means that some of these babies don’t survive. We are striving for change. These guidelines have, at the moment, been withdrawn in the UK and we are doing our upmost to change this. We encourage our mums to get to know their babies and their movements and know what is normal for them. We are educating them about PPROM, Strep B and Cord Prolapse. We advise them what to do if they experience bleeding, foul-smelling discharge. Mums need to be aware of all these complications and what to do if they are experiencing symptoms of them. Some people think that the later your membranes rupture; the higher chance you have of bringing your baby home. That’s not always the case. Management is key with PPROM, we encourage our mums to go and get checked out if they have the slightest feeling something isn’t right and to trust their instincts. Speaking up and getting checked out can save their baby’s life. We know too well that PPROM can change in days, hours or minutes, a strong heartbeat can stop with a click of your fingers.
We are doing our upmost to ensure our families never have to walk in our shoes. Losing a baby took a piece of my heart away, the day my baby died, was the day a big part of me died too.

How LHB came about
Little Heartbeats was born from my own tragedy. My first-born baby grew her wings due to PPROM. Her name was Sinead. I became part of the angel-baby community, a place no parent wants to find themselves. Sinead was born before viability, I found it a battle to get people to understand I gave birth to a baby because of the gestation she was born at. When I said goodbye to my daughter and kissed her for the very last time, I whispered in her ear that her death would not be in vain. My care was like an episode of’ Faulty Towers.’ They gave me false information and said it was another condition, not PPROM. When I received my medical notes the diagnosis was there, very clearly in black and white, ‘PPROM.’

The care I received was appalling. The hospital would not allow me a scan initially, I had to fight for this and it took a number of days. In desperation, I considered leaving the hospital in an attempt to find somewhere, anywhere that would offer me a private scan. I completely lost any trust I had in my caregivers because of this. I was finally, after much persuasion, given a scan, this scan confirmed I had suffered PPROM. I asked the doctor if I could listen to baby’s heartbeat after my scan. She denied me this and it still haunts me to this day. When I did lose my precious baby all they seemed interested in was that I didn’t sue them. Neither myself, nor my daughter were treated with dignity. My baby was put in a store cupboard because they didn’t know what to do with her. I felt like I failed my daughter. I failed to be her voice.
Since this I have fought for change at this hospital, I feel I failed again by not being able to bring changes but I haven’t given up. I will never give up.

I started Little Heartbeats after supporting families in the closed support groups. This all began just after I had given birth to my rainbow baby. At that time, I was very poorly with a breast abscess, but something inside me drove me to do something special to help these women and to do something in Sinead’s memory. I still found it so hard to hear Sinead’s name, so I knew I couldn’t name it after her.
I thought back to when Sinead was born and that because I wasn’t allowed to listen to Sinead’s heartbeat, I had missed out on hearing her little heart beating. So Little Heartbeats was named.
I drafted a website by myself, but I knew it wasn’t good enough. I sold some second-hand items to raise enough money to pay someone to do it for me.
After raising thousands of pounds for one of the main baby charities, they refused to invest in PPROM because they said it had taken me too long to get the funds in and they were not interested in doing research into PPROM. I decided more support was needed for families dealing with PPROM. Regardless of the outcome of the PPROM pregnancy – our families needed awareness and support. Before, During and after.
Originally, I sent out PPROM information to advise and empower those going through it. I knew these packs needed to contain more. Women and their families needed to feel cared about and supported through this difficult time. I never got to record Sinead’s heartbeat and I often thought how much that would mean to me to be able to listen to that sound now. I knew I could make things slightly more bearable for others. I just wanted to offer them the comfort I never had.
This is my brief video of what happened to me it features my rainbow daughter Siobhan, who would not be here had I not insisted on having a simple urine lab tested. I know to this day I would have experienced PPROM for a second time.

PPROM packs
When we are contacted by a mother or family member who is going through PPROM, we send out packs to them.
‘They sent a lifesaving pack in the post with so many things!’
Our packs include:
• PPROM information leaflets
• The PPROM recommendations
• A heartbeat bear
• A colouring book
• Colouring pencils
• PPROM bracelets
• A notebook and pen
We are campaigning so hard to raise awareness, especially for doctors and medical staff. The information we send out in these packs is designed to empower women and fill them with confidence to become the advocate for their baby. A lot of Medical professionals automatically think the worst and tell these parents their baby will surely die. We know that some of our babies don’t make it, but we passionately feel that they deserve a chance.
‘The info was amazing to help me know what to expect and ask for if I wasn’t told about certain things.’
‘The doctors told me I will have Lukas within the next 12 hours! With their advice we lasted nearly 13 weeks! 84 days!’
‘So much information on medical help I needed for not only myself, but for lukas!’
PPROM advice
I always advise our mums to drink plenty of water, and to try coconut water, to rest up, and to avoid baths, intercourse, stress and above all try to keep positive, and sometimes I tell them about my loss.
A Heartbeat bear. This is the most cherished item in our packs. Mothers always tell us how much this bear means. Things are so uncertain and scary with PPROM that families are unsure if they will hear their baby’s heartbeat again. Our bears mean families can have that precious sound recorded forever. A bear they can cuddle and squeeze and when they do they hear the most wonderful of sounds. (This is one thing I was adamant of bringing to our packs because the constant flashbacks of “sorry you cannot listen to your baby again” after my PPROM haunts me every time. So, giving this to our mums dealing with PPROM, makes it so much more meaningful)
‘I immediately transferred the recording of baby’s heartbeat to the bear and cried and cried as I hugged it. I was so terrified that I would never hear that precious sound again.’
‘My Heartbeat bear is something I will treasure my whole life.’
Colouring books
The colouring books and pencils help our mums while they are resting. It’s therapeutic and helps them to zone out and relax from all the stress and worry.
‘Their colouring book helped me break the monotony of hospital life. I coloured a colour changing tree one day which inspired me to write a poem about how the tree changed its colours according to the emotions surrounding it and how us mum’s who are going through PPROM pregnancies are looked after by Angels that return to the tree and spread the news; to me these angels Ciara at little heartbeats and the other mummies in the groups, offering so much support and genuine love towards each other.’
Notebooks
Our notebooks and pens are included so our mums can write down any questions or information.
‘The notebook and pen is in my angels memory box and holds our story of feeling and appointments within its pages.’

Website
The Little Heartbeats website is unique. It celebrates our miracles and remembers our angels at the same time. Our mums have told us that reading our miracle stories gave them hope, but that reading our angel stories made things less scary.
‘I read these stories and felt hopeful, but also felt, in a way, less terrified because of the angel stories. I now knew that no matter what our baby would be so loved and wanted no matter if they lived or not. But also, not to give up hope. These women had been told time and time again that their babies wouldn’t live and they did!’

Support groups
We have a Little Heartbeats support group on Facebook. This was set up to so mothers can support each other. It is a heart-warming and heart-breaking place to be both at the same time. There is so much emotion in our support group. Every single mother in our group has been through a life-changing experience. The amount of empathy they have is inspirational. We are so proud to be supporting others. There are tips and advice on bedrest given from those women who have experienced it. When a miracle baby is born the genuine love and happiness from everyone in the group is palpable. When an angel grows their wings the pure emotion and sadness is felt by everyone.
‘The support didn’t end when Lukas was born, Little Heartbeats and I have so many conversations about future pregnancy & post mortem results. Such a great support group!’
The tragic fact of PPROM is that not all babies survive. More and more babies are surviving the further awareness spread as well as the advances in technology, but because of the risks involved in a PPROM pregnancy, there is a high chance that babies will not survive. They may be born in an emergency situation because of an infection, cord prolapse, incompetent cervix or because baby is in distress. There is also a long list of complications PPROM babies may suffer in neonatal. Babies have been without water for a period of time and this means their lungs may not be developed enough to survive. There are also the NICU complications to overcome; infections, NEC and other premature baby issues. It sadly means that not every baby survives. We celebrate our miracle babies, but remember our angels and support our mothers and their families through this truly heart-breaking time in their lives.

Baby loss cards,
We have recently started to send out baby loss cards and we hope this is giving comfort to the ones who received it, my baby Sinead is never spoken about in our family.

Plants / Flowers
2019 enabled us to send some of our families a peace lily which we send out after at least a month afterwards, because many people soon forget we lost a baby, and this is the time we get to find out more about our care, and in some cases some families are told their medical teams simply do not know why they have PPROM, we were lucky enough to be sent enough funds to be able to send out to around 6 families, we hope we can secure more funding to do this because sometimes we need our loss families to know we have not forgotten their greatest loss of all.

PPROM research

We have teamed up with the UCLH and so far, raised over £21,000 pounds and it is our goal to keep raising funds as they are researching into how to reseal the membranes, it would be a dream come true if we could finally hit target. One day we will
After all a promise is a promise to our loving sleeping angel Sinead

Achievements of the last two years since we were up for this award last time: –

1.Video for the Stem cell patch to reseal the membranes (see video link on email to be added to our profile please)

2019: I made this film to enable the researchers running this pioneering research into the stem cells to help raise awareness of PPROM in pregnancy and the reason why we need to do more and why PPROM needs more research to prevent baby loss.

2. NICE Preterm birth study

We volunteer to be the panel of the new predictive tests for preterm births

3. NHS Belfast
Little Heartbeats PPROM awareness website is now link into NHS Belfast website

4. UKoss study for PPROM before 22 weeks gestation

2019: While at Nigel Simpson preterm clinic, I convince the Liverpool Women research team to do this research project;-

Our team have secured a UKOSS PPROM research study thanks to the preterm research team at Liverpool Women’s hospital and teamed up with Wellbeing Women to secure the funding, this study we hope will research what happens when women PPROM in the UK before 22 weeks gestation and after the results we can work on PPROM guidelines before 24 weeks gestation to help provide information so parents can make informed decisions

5. RCOG Clinical guidelines and patient leaflets

2 Years ago our guidelines and patient leaflets disappeared from the RCOG website, and we campaigned to bring these back, 2019 our team manage to achieve the impossible and we worked tireless with the RCOG in bringing these back, after losing Sinead in April 2010 this is an massive achievement even though I am saddened it only covers from 24 weeks gestation it is a very good start in the right direction and we hope when we obtain the PPROM Ukoss study results we be able to finally have the PPROM clinical guidelines and patient leaflets for all gestations

I made one promise to Sinead, my first-born baby born sleeping, that I will make changes, my PTSD prevents me from feeling like I succeeded but I feel proud of our small team, and proud of me for not allowing my illness to prevent me making a small difference.

My thought is, just one more Free PPROM care pack, just one more pack may just make a small difference to someone else’s

Latest Testimonials

By Nicolle R PPROM loss mother from France
When PPROM happens to you, you usually have no idea what it is, why it happened or where to turn. Doctors around you are very pessimistic and grim and nobody really tells you what you long to hear and what is also the truth: you can still fight for your baby and there is hope!…that is except Little Heartbeats. Not only do they tell you this needed truth, Little Heartbeats immediately provides you with so much information about PPROM, other women’s testimonies and stories about PPROM, and a comfort box full of support tools for dealing with PPROM and honouring your baby whether he/she makes it or not. Whereas most organizations have a more impersonal approach, Little Heartbeats truly cares about giving you the hope and the strength you need to either push through NICU or to grieve your precious little loved one as I had to do. It was an unthinkable task grieving my 3-week-old son and Little Heartbeats was there for me as they truly understood what I was going through. I will always be very grateful to them for existing and doing what they do.

By Kate S Grandparent from the UK
When my daughter told me she’d PPROM I had no idea what that was or what it meant. The care package received from Little Heartbeats contained such lovely items to occupy my daughter and allow her to record Bea’s heartbeat, but also so much information we were able to understand the diagnosis but, more importantly, empowered my daughter to make decisions she was comfortable with, which were against the options advised by the medical team who, eventually, said how impressed they were with the information us, as a family, had and made them agree to honour my daughter’s wishes in regard to continuing with her pregnancy. I honestly doubt we’d have got to meet Bea, and had that precious with her as a family, had it not been for Little Heartbeats. Although Bea gained her angel wings, I know we will be forevermore grateful to Little Heartbeats and it has made me determined to help in whatever way to help continue their work which, as well as saving many baby lives, helps with the mental well-being of families doing through an awful time

Penny PPROM loss mom from USA
On June 3rd I found out that there was no amniotic fluid at all surrounding my baby. On June 4th I had this confirmed by a specialist. That specialist told me that even though there was still a heartbeat that the loss of my baby would be immediate and even encouraged me to go to the hospital and ask for an abortion. I was heartbroken, in shock and still so in love with the little heart beating inside me. Despite the specialist’s recommendation, I decided to try for hope. I went home, started scouring the internet and found a new for what happened- PPROM. My doctors didn’t even tell me there was an official diagnosis for this. As I began reading, I found this group, Little Heartbeats, and was able to get all of the information I needed- health and diet information, realistic expectations, next steps for each part of pregnancy and hope. Unfortunately, I lost my daughter a week later at 14 weeks 5 days, but I was able to be at peace with that because after knowing all of the information I did everything I could. Little Heartbeats continued to be there for me by offering support, a safe place to share my feelings and sending me the most thoughtful care package to remember my baby Grace by. They have been here for me in the months after losing her as a place to share my thoughts and remember my beautiful baby. I don’t know how I would’ve gotten through this difficult time without the support and care of Little Heartbeats. I needed a helping hand, and they gave me 100’s.

Keely PPROM loss mum
Little heart beats as helped me raise awareness unfortunately my baby did not make it and I have a beautiful Angel baby but I had comfort once I knew about this charity as I know there were other ladies out there in the same situation as me waters going early I honestly did not know this could happen until it happened to me and I wish all the ladies all the best with their pregnancy and I hope for a good come out for them.

Puja Baby loss mum
Little Heartbeats and Ciara Curran supported me through the darkest hour of my life. I had no idea what caused my PPROM and the hospital provided little information or detail about what I had just need through. Ciara stepped in and was able to answer so many of my unanswered questions. The Little Heartbeats non-profit continuously steps in to support me personally during difficult milestones. Often times that are overlooked and forgotten by friends and family. Ciara and Little Heartbeats replace any void, providing me with help and support 24 hours of the day. I would be lost without Ciara and LH Charity during what has been the hardest time of my life.

Gemma S Baby loss mum to Baby Leiona
You give me the information that the NHS failed to give me,
You give me hope & knowledgeable
Emotional support throughout

Saving baby lives in memory of Sinead

Chanelle W
When I PPROM at 21 I was filled with doom and gloom in the hospital there was no hope and nothing they could do. I stumbled upon little heartbeats late one night about a week after my waters had gone. Ciara Curran actually saved my daughter! Drs were already in talks of termination and I believed that was my only option. Within days Ciara sent out a pack to me and from that moment on I stuck to the PPROM advise. Ciara would be awake all hours talking to all us mums. I’m forever grateful for Ciara and the little heartbeats group. They gave me hope and made me realise it a really dark time I wasn’t alone. My daughter was born at 33 weeks and is now a healthy happy 9-month-old!

Larissa H – PPROM rainbow after loss
This was my 2nd pregnancy, I had already had a premature girl, I thought I had been through it all then I got 22+4 weeks and my waters started leaking, I went to the hospital to be confirmed with PPROM, I was told to terminate what otherwise was a very healthy pregnancy, I cried and cried, I had just had 2 miscarriages and now I was being told to make my baby an angel myself, I was distraught but came across little heartbeats on Facebook, I spoke with Ciara and other mums who gave me their positive and not so positive stories but it gave me full hope and determination, I found a backbone and told the doctors “I will not terminate as where there is a heartbeat there is hope”
After my waters went it wasn’t such a plain sailing ride, I had bleeds, lots of hospital admissions but I managed to get through it all with the love, help, support and commitment from Ciara, her team and all the other mummies going through or who had gone through PPROM.
I managed to keep my boy safe inside me until 32+6 weeks, I stunned doctors, I stunned myself but I done it.
After I had my miracle, I have sadly been told I am not able to medically have any more children so without Little Heartbeats, I may never have had my little boy at home safe where he is loved and belongs.
So, thank you Little Heartbeats you have literally saved mine and my son’s lives.

https://youtu.be/wTm-qjt0dp0