Rose
I had a maternal triple screening blood test and the results came back at 1:30 risk. I had had an ectopic pregnancy six months before and lost one fallopian tube, so I decided against invasive testing due to the risk of miscarriage. Our 20 week scan didn't identify any issues other than short femurs, but because I am only 4ft 11 I was hoping that all was well.
I was booked for further growth scans because I'd developed gestational diabetes and at 29 weeks what appeared to be a clenched fist was identified as missing bones from her other hand. We were then referred to the fetal medicine team for further testing.
At this stage we were advised that our baby girl had a large inlet VSD and that if she was confirmed with Edwards Syndrome that cardiology wouldn't see us after her birth. We had an amniocentesis which then confirmed the T18 diagnosis.
As a couple we were devastated. We considered termination because of how negatively the diagnosis was explained. However, our decision was to let Rose make her own way in this world and even though there was a very high risk of her being stillborn we continued with the pregnancy. I had to challenge our hospital for a caesarian section if Rose got into fetal distress and also resuscitation at birth. This was a significant strain on the pregnancy having to challenge our hospital for active treatment whilst already carrying a poorly baby.
On the 29th of December 2016. Rose arrived on her own with no surgical assistance and was born at 37 weeks weighing 4lb 5oz. She needed five mins of oxygen help at birth but was in room air after eight minutes. She had genetic bloods after birth confirming full T18. Her VSD was later confirmed as a smaller muscular one. She had gastroesophageal reflux meaning her feeds had to be given in small regular doses to avoid aspiration into her lungs. She had nasogastric feeding from birth which was changed to Nasal jejunal feeding at 9 weeks old which was much more comfortable for her.
A beautiful and alert little girl who nobody at our local hospital expected to survive to delivery. I am so glad my husband and I went with our hearts. She loved her dummy and cuddles from mummy and daddy. Rose was fussy with baths sometimes she would love them other times she would cry, but very much loved being massaged and cuddled in a warm towel afterwards.
I strongly feel that babies born with genetic conditions should all be provided with a standardised level of care. I hope that the challenges faced by parents when a diagnosis of T18 is confirmed is altered in the future by these special babies who make it. Rose was one of those babies that surpassed the hospitals expectations and therefore did cause some provoking conversations when the hospital were treating her.
We had fifteen weeks (104 days) with this little girl who changed our world forever. She passed away 12th of April 2017. She was loved by all who knew her, her big brother Jenson always talks about his baby sister and he talks to her now in heaven.
She will always be in our hearts, our special little angel.
Rose Veronica Flesher
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Since this article was written, Rose’s family have had a very special Rainbow baby! Seth Eros was born on the 26th May 2018 and is a happy and healthy bundle of joy! His middle name means “love’ and is an anagram of Rose. A gift sent from heaven from his big sister Rose.