I hope you will find my daughter’s website informative and useful. When Cerys was born we struggled to find much information about Edwards Syndrome. Especially in terms of what living with Edwards Syndrome might entail. We were pretty much in the dark. We have put this website together in the hope that we might change that. As well as telling Cerys’ story, we have provided data on her feeding, growth and development which might help you to gauge how your child is doing.
What we do not wish to do is paint a false image of Edwards Syndrome. It is a fact that most Edwards Syndrome babies do not survive to childbirth or beyond the initial few hours of birth. In many instances fetuses can have severe abnormalities and deformities. Whilst Cerys did have some of the cosmetic characteristics of the Syndrome, her physical deformities were mainly linked to her heart. She was not the norm, and we were extremely lucky that we were able to meet her and get to know her.
During her life, the question of ‘quality of life’ arose frequently. We were led to believe that Cerys would have no quality of life, but we beg to differ. Whilst many babies with this syndrome never get to leave hospital or come off ventilators, for the ones that do they can be happy and contented. You will obviously have to re-adjust your expectations of what they can achieve, but Cerys constantly amazed us. We were fortunate enough to meet two children who have survived to the ages of 6 and 20. They were both happy children, surrounded by love.
Despite the horror of giving birth and being told about my daughter’s condition, I feel immensely proud of my girl. She put up a tremendous battle to stay with us as long as she could, and proved the medics wrong on several occasions. She was beautiful, quirky and strong.
I am sorry if reading this, you find yourself in a similar position to us. I just hope that this website can help you come to terms with your child’s condition and enable you to enjoy the precious time you have together for as long as you are able. If I can give any advice, it would be to accept any support you are offered. We were reluctant at first to accept the support of the hospice. I guess we had an image of what that would entail, and we struggled to come to terms with our child being in hospice care. Looking back I am not sure I could have coped without the hospice. Cerys’ website lists some of the help we received in our area. Please do seek out what help you too can access locally. Do not face this alone.
I wish you well on your journeys. I do hope you can find heart and strength from Cerys’ story. I have added a page at the end for you to post comments/questions to other readers, or if you wish to add comments on your own experiences/child’s development etc. Hopefully if we build a picture of what living with Edwards Syndrome is really like, we can help other parents and professionals understand more about this condition.
Wishing you love, strength and hugs