We are Helen and Chris. We are the parents of Rumer, who was born on 24th September 2015 and sadly died on 1st January 2016.
Rumer was diagnosed antenatally with trisomy 18 (also known as Edwards' syndrome). Usual practice in the UK is to manage children with trisomy 18 palliatively, but after a lot of research, we decided we wanted to pursue an active treatment path for Rumer. We felt strongly that this was in her best interests and increased her chances of survival. Unfortunately our medical teams, especially our neonatal team, were not initially on board with this approach.
We pursued our desire for active treatment for Rumer, which we defined as not denying any treatment based on her diagnosis of trisomy 18 alone but treating according to her clinical condition. We had a lot of meetings with the medical teams, sought second opinions from three hospitals, involved our MP, wrote a seven-page submission for our hospital's ethics committee (available here) and attended their meeting, and eventually the neonatal team agreed to active treatment for Rumer.
At birth, Rumer was intubated and spent six weeks in the neonatal unit. At the end of this time we had an extensive discharge meeting involving a number of professionals, including general paediatrics, A&E and paediatric intensive care doctors, and the hospital agreed to continue to treat Rumer actively should she become unwell.
Rumer came home. She met the cats; she slept in her cot.
Then, five days later, she had an apnea. Three days in another hospital's A&E before transfer back to our catchment hospital for investigations. Two weeks there before discharge home, and back four hours later with RSV (a viral infection) caught in the hospital.
A week on the ward before transfer to intensive care and four weeks there before she deteriorated and we made the decision to withdraw treatment. Rumer died at 7.17am on 1st January 2016.
Rumer was buried in our back garden on the 4th February 2016 and will always be with us.
Despite her short life, we have no regrets about our decision to pursue active treatment for Rumer. Without it, she would have died within hours due to respiratory distress, and despite a long time in hospital, she had a full life. She loved stories, songs, warm deep baths, being cuddled and being held skin to skin. We were there with her, holding her and being with her. Research suggests that parents who pursue active treatment have fewer regrets, and for us this definitely is true.
This blog is to tell Rumer's story and to advocate for active treatment to be available for other babies with trisomy 18 in the UK. We think that all children with trisomy 18 are entitled to full, active treatment according to their clinical condition, with no denial of care due to their chromosomal condition. We'll also talk incidentally about other things in our lives and Rumer's life, and about many of the things we found having spent long times in hospital and being parents of a medically complex child.
- See Rumer's Story for more information about Rumer's life and our experience of advocating for her.
- See Authorship of Rumer's Rainbow to read about how and why we compile Rumer's Rainbow, and what to do if you're an involved party with a different perspective on something we've written.
- Our home page always links to the latest posts.
- The Search Rumer's Rainbow tool on the right of every page (or at the top of every page on the mobile site) allows you to search for anything on our site.
- Refer to the Post archive on the right of every page for a list of posts arranged by date (desktop site only).
- Click on one of the Labels on the right of every page for access to posts arranged by subject (desktop site only).
- And finally, the Menu at the top of every page links to photos, documents, lists of research and more.