PPROM outcomes and (lack of) guidelines

Here at Little Heartbeats we are passionate about supporting women through and raising awareness of PPROM (when your waters break before 37 weeks of pregnancy). Stories – our own personal stories and the stories of the many women and families in our community – are a fundamentally important part of our work and an invaluable resource for other families and the medical profession to learn from.

PPROM essentially has two outcomes, both of which need to be talked about to improve the maternity care of women dealing with PPROM in pregnancy.

One outcome is our little blessings, the babies who survive this. One of the issues we see all too often is many professionals telling families they have only one choice: to consider termination as they are under 24 weeks, have not yet reached viability, and their babies will not take a breath or will be left severely disabled. But there is another choice; babies do survive this, and every day our miracles are proving that where there are heartbeats their truly is hope.

The other outcome is baby loss. Sadly not every baby survives PPROM, and it is equally vital to talk about this, to support families through this, to hold close the memory that these babies were very much loved.

Last year, key guidelines and patient information relating to PPROM was archived. Clarity has been lost, in particular in relation to the question of when to deliver after PPROM. A number of women in our community have fought hard to be treated according to best practice – best practice set out so clearly in the guidance when it was available – but in too many cases, although we provided them with medical and research literature to support their arguments, their requests were neglected and their care was inadequate.

Some of these families lost their babies in circumstances where, had the guidelines remained in place and been followed, they would most likely have survived. This should NOT be happening.

Little Heartbeats raised strong concerns about the implications of the archiving of the guidelines. We are pleased to report that this decision has now been reconsidered, the absence of guidance and patient information has been recognised and new guidance is in development. We are working to contribute to the process. We are not at present being involved as much as we would like – particularly given all we have done to fill the guidance gap in the meantime, and all the wonderful people in our community whose experience is shared so readily – but we persevere.

PPROM is a serious condition and needs to be treated as such.

Those currently living through PPROM deserve to be provided with accurate and balanced information about risks and outcomes, and have a right to be involved in decisions about their care. The voices of our women and families need to be heard. Our experiences need to be valued.

Our team here at Little Heartbeats are so very proud that no matter how hard this work is, carried out on limited funds on a volunteer basis, we have helped save babies lives.

Thank you to all those who have donated to allow us to continue in our work. Thank you to all those who have shared stories. We could not do this without you.

Here are the stories of Baby Aspen and Baby Logan. These illuminate the equally important issues of experiencing PPROM under 24 weeks, and identifying the right time to deliver at the later gestations.