Our Story...

We lost our daughter Sophie in November 2017 shortly after she was born in the Ulster Hospital Maternity Unit. Sophie was born with a condition called Edwards Syndrome (Trisomy 18). Edwards Syndrome is a life-limiting genetic disorder caused by the presence of an extra copy of chromosome 18. Babies with Edwards' syndrome can have a wide range of different serious health problems, including but not limited to, physical malformations, structural heart defects, kidney malformations, intellectual disability, developmental delays, growth deficiency, feeding difficulties and breathing difficulties.

Sophie's condition was diagnosed late in pregnancy, when her rate of growth became a serious concern. From the moment that we received the devastating news that our baby was seriously unwell, the care and support that we received by the staff at the Ulster Hospital was second to none. We were put in touch will all the support services available inside and outside of the hospital which provided us with information and helped us to make important decisions and put together a birth plan during a very stressful time. Sophie was born in a suite away from the main delivery unit, which allowed us privacy and important family time together. The suite had a separate family room which allowed us to have an additional area for our close family. Sadly Sophie passed away shortly after she was born due to complications from her condition. We were provided with a memory box and a cuddle cot which allowed us additional precious time to build memories with our daughter and meant she wasn't taken away from us. The midwives and doctors were wonderful and very supportive throughout.

Due to the things that Hilary and the Forget Me Not group have in place, we were able to focus on our daughter and make memories that will last a lifetime. So now we just want to be able to give something back in memory of our baby girl Sophie.

Who is the 'Forget Me Not' group?

'Forget Me Not' is the name of the liaison committee of bereaved parents and staff at the Maternity, Gynaecological & Paediatric wards of the Ulster Hospital. It was set up in 2007 by Bereavement Support Midwife, Hilary Patterson to improve and enhance the experience of parents who have been bereaved through miscarriage, stillbirth, neonatal death or the death of a child.

What do they do?

They meet approximately 6 times a year and have influenced the care provided to parents during the very sensitive time following the loss of a child. The aim of the focus group is to identify what is being done well and also identify areas of service that could be improved.

The group provides a forum which welcomes all parents who have been bereaved in the Ulster Hospital to discuss the care provided to them which helps in the groups commitment to providing a service that is of the highest possible standard.

The group raises funds to provide bereaved parents cared for within the Maternity Unit with a digital camera, photo printer, memory boxes and special baby blankets.

The service users and the multidisciplinary healthcare team join together to organise an annual memorial service, which unites parents, family, friends and staff to remember the children and babies who have died. The work of the 'Forget Me Not' group is crucial to the provision of the annual service.

How we are raising money?

The Neely team of the Ulster Hospital are running the Belfast Marathon on 7th May 2018 to raise funds for the 'Forget Me Not' group. My auntie and cousin are part of the Neely relay team and me, my husband and some more relatives will also be running in memory of Sophie and to raise awareness of Edward's Syndrome. All proceeds raised will go to the 'Forget Me Not' group at the Ulster Hospital.