Elain's Story

Elain was born in March 2010 with complex Pulmonary Atresia, VSD and MAPCAs. She spent much of the first year of her life critically ill in Bristol Royal Hospital for Children. In Spring 2013, following several attempts at trying to fix Elain’s heart we were told that nothing more could be done for her. Her Cardiologist was open and honest and told us that she would be highly unlikely to reach her teenage years. With the help of the community palliative care services and Ty Hafan Children’s hospice we prepared ourselves to make her comfortable for however long it was she had left.

In 2014 however, after an unexpected period of relative stability and after further investigation, we were given a high-risk surgical option. After much deliberation we decided to give it a shot and in April 2015 Elain underwent a partial repair. During the years following this surgery she went from strength to strength. For the first time in her life, she was able to eat orally and completely independent from her feeding tube, she gained weight, attended school full time and was able to enjoy activities such as swimming, horse riding, softplay and family holidays. Apart from two interventional cardiac catheters in 2016 and 2018 she has not required any further surgery.

In January and June 2022 the team at Bristol carried out a further cardiac MRI and catheterization to see how things are looking for Elain. Although still currently stable, once again they have highlighted that Elain’s anatomy is not particularly robust or compatible with a long life. Although they have presented us with another high-risk surgical option, we currently feel that Elain’s quality of life is so good that it is simply not worth the risk at this stage. Waiting also unfortunately also carries a risk and it may be that surgery will no longer be in her best interests further down the line.

The Future

With her future still looking uncertain, we continue to receive an incredible amount of support from both the community palliative care team and Ty Hafan Children’s hospice. Through the darkest times and when it feels like there is no hope they are there to help, support and provide much needed comfort and reassurance.

She has overcome so many challenges in her life and continues to exist in a precarious place when it comes to her heart and heart plumbing.

Over the past few years, as surgery and surgical options have become fewer and further between, we have benefitted more and more from services such as the children’s hospice Ty Hafan and community palliative care services.

Bore Coffi Elain

To show our appreciation of these services and to celebrate Elain’s life we are holding a coffee morning on 1st of April from 9:30-12 at Rhydypennau Hall in Bow Street :-)

About the charities being supported

Ty Hafan provide comfort, care and support to children with life-shortening conditions and their loved ones.

The Wish Fund run by Hywel Dda Health Charities create magical memories and experiences for young people with life-limiting or life-threatening conditions across Ceredigion, Carmarthenshire and Pembrokeshire