Difficult decisions made a little easier

Expectant parents who find they have to make a difficult decision during their pregnancy are now able to get supporting information all in one place thanks to a patient who has shared her very personal story.

When Tara Guest, 37, found out at the 12 week scan that her first baby had anencephaly, a fatal condition involving the bones in his skull, she and her partner Mark found themselves having to make a difficult decision at a time which for most is a very happy occasion.

Tara set about looking for support groups and information on the internet and found it very difficult and distressing trying to find the right information. As a result she contacted Alison Evans, Antenatal Screening Co-ordinator at the Norfolk and Norwich University Hospital (NNUH) and between them and the Chaplaincy team at the NNUH, they set about making the information more easily accessible and all in one location on the NNUH website.

Tara said: “I think it is natural when faced with a horrendous situation like this to want as much information as possible but I found that immediately after we were told the devastating news it was impossible to take anything else in. While the internet is often great for getting information, in my case I think it did more harm than good, as when I searched his condition it brought up awful images, inaccurate information and opinions swayed by personal belief, which were deeply unhelpful.

Tara adds: “I think the web page Alison has put together would have saved me a lot of grief. Having the relevant information on one site together with approved links means there is no need to look elsewhere. Plus it is always available to access whenever the parents are ready.

Tara continued: “Losing our first baby, a boy we named Oscar, in 2011 obviously had a huge impact on our lives, but if there is a positive to be taken from it, it is that hopefully other parents who find themselves in a similar position to myself and Mark might be helped by this page.

Alison Evans said: “Most people have normal pregnancies and are not faced with making difficult decisions. Those who do find themselves in the position can feel very alone. There is a lot of information to take in at a very stressful time. Directing people to one place where they can access credible support will hopefully provide them with the help they need, when they need it.”

Tara’s story and information on the different types of support available can be found on the NNUH website here.

Tara has since gone on to have a healthy baby girl, Freya, who was born on August 26 this year at NNUH.