Kidney disease and pregnancy: what do women diagnosed with

chronic kidney disease need to know?

 

Kidney Wales Managing Director, Judith Stone, talks about her passion for the Pregnancy Choices study being carried out by the Welsh Renal Network.

 

For the last six months or so, I’ve been fortunate to join a steering group of dynamic and passionate women, who are leading research into pregnancy choices for women with chronic kidney disease (CKD).  I’m contributing both in a professional capacity, as Managing Director of Kidney Wales, but also personally as a mother with CKD, blessed with two young daughters.

 

Through an online survey and in-depth case studies, this year long research part funded by the British Renal Association and Kidney Care UK, is gathering rich feedback from women with CKD, aged 18-50, across the UK.  There are approximately 900,000 women diagnosed with CKD across the UK and this is our target audience for involvement in the research!

 

The aim is to improve understanding of how women make decisions about starting/expanding a family when living with CKD.  Outcomes will help develop new tools and interventions to help women and clinicians when discussing options for starting/expanding a family.

 

A virtual event was held on 13 April 2021 to share the initial findings of the research, which demonstrate the variety of challenges faced in getting pregnant, and the factors women take into consideration in decision making.  Women have described their decision making processes as complex, worrying, exhausting, with a sense of being ‘in limbo’ and on an ‘emotional roller coaster’.  Becoming a Mum can positively and/or negatively impact on women, with feedback ranging from their experience ‘made life worth living’, to ‘severe anxiety’ and ‘I nearly died’.

 

The survey results show clearly that women have very personal and variable attitudes towards whose responsibility it should be to start a conversation about contraception, starting/expanding a family and the risks that may be involved – should it be led by women ourselves, or by clinicians?

 

A small percentage of survey respondents to date would like to have children, albeit not themselves, but rather through other means such as adoption, fostering and surrogacy.  However, the options appear to be not well understood at earlier stages of decision making, often resulting in women and their partners sadly experiencing huge loss, grief, and health complications on their path to starting a family.  Speakers at the event from adoption and surrogacy services explained the factors influencing their decision making around the child and family, and spoke of case studies of families living with CKD.

 

This research is lifting the lid on a topic previously untouched by the academic and clinical community.  Yet the subject matter is absolutely fundamental to the experience of all women with CKD. 

 

The survey findings and stories of the lived experience of patients are so profound that I believe this research will be a game changer for women with CKD in the future and I’m enthusiastic and committed to being part of the journey.  Kidney Wales will continue to share information about the research and to encourage and support women to get involved. 

 

 


Want to find out more?

 

The Pregnancy Choices study is still open – until 31st August! 

 

If you are a woman aged 18-50 with CKD, and have not responded already, please share your experiences: https://cardiff.onlinesurveys.ac.uk/ckd-engage

 


Links to further information:

 

Kidney Care UK guidance on pregnancy and CKD: https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/pregnancy-and-chronic-kidney-disease/

 

Case study from transplant patient, Helen Williams (page 25 on Kidney Matters magazine – Winter 2020): file://kw2012ess/Folder%20Redirection/Judith%20Stone/Downloads/Kidney_Matters_Issue_11_-_Winter_2020.pdf