Trisomy 18, also known as Edward’s Syndrome, is a genetic condition caused by having three copies of chromosome 18 in each cell in the body. This triplication can causes major structural defects such as heart problems, joint problems, cleft lip, feeding problems and respiratory issues. Children with this condition often have developmental delays too. It is a sad fact that the majority of these babies die before birth and of those born alive, only around 10 percent live beyond their first birthday.
I first came across Trisomy 18 in university. As a student midwife, I have to explain to women about various screening processes we have. One of the screening tests, a 12-week ultrasound and biochemistry test, screens for trisomies 21 (Down’s Syndrome), 18 and 13 (Patau’s Syndrome). I later learned a close friend’s brother had had trisomy 18 as well. Through her and several clinical experiences I became more interested in these trisomy conditions and the experiences of families with these babies. I even wrote my dissertation on the subject. I found that there is a huge lack of up-to-date information on these conditions within the medical community and often parents whose children have these conditions have to put up with outdated or offensive opinions from healthcare professionals and often have to fight to get their children the care they deserve.
I Am Not a Syndrome: My Name is Simon is the story of the life and love of Simon Dominic Crosier, the dear son of Sheryl and Scott and brother of Sean and Samuel. As it details a true story I can’t really review it in the same way as my other books as what is contained within the pages is personal and the view of Sheryl, the author. It is well balanced between narrative and providing details of Simon’s condition and gives a valuable insight into the life of a family with a trisomy child. This family’s religious beliefs are obviously incredibly important to them and helped them through Simon’s journey and as such there are many religious references in the book.
Simon’s life and personality come to life within these pages. It is clear he had a huge impact not only on his family but a much wider community. I am now part of that wider community as I will never forget this book or Simon’s story. The way Sheryl describes Simon and how he changed the lives of many is incredibly touching and as a reader I feel that I knew Simon through his mother’s word. I certainly have a better perspective on the lives of these families.
I would recommend this book as mandatory reading for any midwife, obstetrician, neonatologist or anyone who is likely to come into contact with families like Simon’s. Perhaps reading about the experiences of a real baby and family with Trisomy 18 rather than a medical textbook with doom and gloom plastered over its pages will change the attitude some professionals have to this condition and the choices made by families advocating for their children.
I would also recommend it to anyone who has been told their child has Trisomy 18 or is at risk of having Trisomy 18. As previously stated, medical professionals often (sometimes unintentionally or with the best intentions) predict the worst and give an incredibly bleak outlook for these children. This book doesn’t suggest that everything will be easy, but that it can be okay and your child can have a very meaningful life regardless of a diagnosis.
If anyone would like to learn more about Trisomy 18 here are some places you can find information:
SOFT UK – http://www.soft.org.uk/ – A support site for Trisomy 18 and other rare trisomies. Provides good, up-to-date information for families and healthcare professionals and has a forum and resources.
TRIS (Tracking Rare Incidence Syndromes) Project – https://www.facebook.com/TRIS.Trisomy.project – A group that aims to improve education and resources on Trisomy 18 and many other syndromes.
Emily’s Star – http://www.emilysstar.co.uk/ – A charity set up by parents who lost a daughter to Trisomy 18. I follow them myself and they do wonderful work for neonatal units and families within their area.
99 Balloons – This video is about Eliot who was born with Trisomy 18 and lived for 99 days. It is narrated by his father.