Sadia Haqnawaz, Patient and Participant Involvement Panel member at Central and South Genomics, has worked with teams at Birmingham Women’s and Children’s Trust, Birmingham and Solihull ICB and ARC Antenatal to create a Fetal Medicine Care Package aimed at supporting parents who have been referred to fetal medicine due to problems with their baby’s development.
The Fetal Medicine Care Package was co-created by parents, for parents in Birmingham. Launched in October 2025, it aims to support their decision-making journey to continue or end their pregnancy. The Fetal Medicine Care package is an A5 sized plastic folder which contains:
- A booklet with information, quotes and signposting to online resources such as ARC Antenatal web pages.
- A notebook and pen for parents to keep notes as there is often an overload of information.
- Comfort items, including a teabag, seed card and pocket hug, so parents feel less lonely and know that others have travelled the same path.
The idea was originally thought up by Sadia, who was supported by Dr Marion Gibbon, Deputy Director of Public Health for Birmingham, and Amy Maclean, Birmingham Family Hubs, to obtain funding from Birmingham and Solihull ICB. Sadia stated: “The idea came from having personal and family experience of loss due to a severe condition. I was aware of where the support was lacking, which is what other parents also told me.
“After a loss you are normally provided with a memory box, but bereavement begins at diagnosis of a severe condition, when you have to make the choice to end or continue the pregnancy.”
120 packages were supplied to Birmingham Women’s and 120 to Birmingham Heartlands hospital.
In partnership with Antenatal Results and Choices, a series of workshops were held both online and in person with people with lived experience who expressed interest in co-producing the care package. These sessions were offered as both group and individual sessions to remove barriers to involvement.
Sadia stated, “This is a great example of co-production led by lived experience, that would benefit other patients.
“The team at Birmingham Women’s Hospital were really supportive throughout the process, particularly Louise Rimmel and Leo Gurney from the Fetal Medicine team, Directory of Midwifery Louisa Davidson, and Alison Rae and her bereavement midwifery colleagues. I’d also like to thank Tracy Gadd and the bereavement midwives at Heartlands Hospital. I’m really grateful to them for their help throughout this process.”
