Little Heartbeats needs your help! URGENT
- 11 minutes ago
- 3 min read
Little Heartbeats needs your help! URGENT
We are the UK’s only PPROM Patient Support Group, and have worked tirelessly to support women experiencing this terrible pregnancy complication.
As well as this, we have co-authored papers on PPROM management, and worked with the Royal College of Obstetricians and Gynaecologists (RCOG) to publish a Scientific Impact Paper, giving recognition to the condition and improving the care women get worldwide.
HOWEVER:
The RCOG just put their Patient Information Leaflet out for consultation, and Little Heartbeats are not mentioned anywhere! This leaflet is based on the work we were involved with doing, and we provided our comments, based on our years of experience, and our response was ignored.
We believe that when women are going through PPROM, they need support, and to know they are not alone! It is usual for support groups to be referenced (for example, the pre-eclampsia leaflet mentions both Action on Pre-Eclampsia, and Tommy’s).
We are referenced in the PPROM patient leaflet for 24 weeks and over leaflet. Therefore it is even more upsetting.
If Little Heartbeats has helped you or your loved ones through the terrible experience of PPROM, please consider writing a response to their draft Patient Information Leaflet link here....
Closing date for comments by Monday 2nd March 2026 by midnight
Note....
"This work is done in memory of my baby Sinead, and my colleagues babies, Loki and Freya. Myself and my team are all volunteers; this is our passion and this is our lives. Little Heartbeats is more than just a group, it is a lifeline that no medical team can provide.
"Thanks to everyone who takes the time to help. We are writing a letter of concern about how we have been treated. After over a decade of work, I believe we should have been heard and deserved to be treated with respect."
Link to the clinical SIPS paper (We worked so hard to get here, 16 years in April since losing my Sinead)
“This patient leaflet must accurately reflect the findings of the SIPS clinical study. As a layperson with deep insight from mentoring thousands of women through pregnancy, I am more than just someone with lived experience. Unfortunately, the RCOG denied our suggestions and turned down an in-person meeting.
“As someone with dyslexia and PTSD, I truly believe women voices including those with different experiences and challenges, add enormous value to patient information leaflets. I hope the RCOG will now agree to an in-person meeting with Ciara and her Little Heartbeats team with the doctors to help refine this draft SIPS patient leaflet. This would allow us to ensure women's real patient voices are fully heard and reflected. We've lived through these experiences, we've mentored thousands of others, and we understand the realities deeply. A bit more work together would help get it right, especially when women are making life-changing decisions they will carry with them forever, both physically and mentally.”
2017–2019: Little Heartbeats Collaboration with the RCOG at their offices. PPROM Leaflet
Here at the RCOG offices in 2017–2019:
Ciara, Founder of Little Heartbeats, during our partnership with the RCOG.
When Little Heartbeats worked closely with the RCOG to develop and support the PPROM patient leaflet for women experiencing PPROM at 24 weeks and over (launched June 2019).
Below: Rachel, who helped us with this work, a fellow PPROM mum and former volunteer.
With Matthew, who previously worked in the RCOG patient leaflet department and thankfully accommodated us.
Grace Hopper
"The most dangerous phrase in the language is, ‘We’ve always done it this way.’"
Helen Keller
"Alone we can do so little; together we can do so much."
"A woman’s struggles are historically just, not that serious. They’re brushed off, dismissed, or flat out ignored because they’re “just” not that big of a deal. Eliminating this way of thinking is crucial. It can lead to earlier diagnoses, proper treatments, and healthier, fuller lives."
Listening and working together can achieve more
From the heartbreak of losing my firstborn Sinead to PPROM, I founded Little Heartbeats and turned silence and heartache into action. As a woman who has helped women, I campaigned tirelessly with doctors and the RCOG to reinstate the clinical guidelines, co-shaping patient leaflets for 24 weeks and beyond, driving key research, and mentoring thousands of women through their pregnancies.
I've listen to other women who've lived it too, collaborate to refine every detail, support each other and together we build stronger, safer, more respectful pregnancy care for the next generation of women. Let's ensure we get this DRAFT SIPS patient leaflet and paper right now, as we continue working on research to enable perfection of the Green-top guidance and leaflets for women everywhere who lose their waters before 24 weeks in pregnancy.
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