Our second son was born with a genetic condition , Trisomy 18 or Edward’s Syndrome. A life limiting condition affecting approximately 7 in 10,000 births. We were blessed with having Bryn with us for nearly 6 months and he was a huge character and brought us so much joy and taught us a lot.
Bryn’s Helping Hand was set up to have something positive from such a devastating time. We realised how much support is needed for parents of babies with life limiting and life threatening conditions.
- Having a baby in intensive care is overwhelming, the medical side overwhelms you, and we want to create neonatal boxes that bring a focus back to the human side of things.
- Kangaroo care – so important for babies in hospitals for a long time. There is lots of research to show how babies given kangaroo care thrive, get stronger quicker, heal quicker, and how it can help parents bond. It is fantastic for parents emotional and mental health especially mothers who may have had a traumatic birth.
- There are many therapists around locally who can help babies adjust to the world after intensive care. We want to bring those together into one resource so parents don’t have to continually search out for help but can have it at their fingertips.
- Caring for a special needs baby is exhausting. It isn’t just the care for the baby but the stress involved in dealing with the medical side of things. We want to create a team of therapists who can offer at home treatments or at local support groups.
- Expressing Breastmilk – when your baby is in intensive care quite often the only choice if you want to feed breastmilk is to pump so milk can be fed by NG-Tube, I hope to improve the quality of support and information and resources available in local hospitals for this. I
- We also would like to offer assistance with memory making, especially for those whose babies may not survive pregnancy or birth. E.g. 4D scans/videos.