Florence Johnston
My Daughter Florence
During a very difficult pregnancy, doctors wanted to so multiple invasive testing as Florence had suspected high risk trisomy problems. They advised us to medically terminate but as parents we decided against this.
At 38 weeks 3 days our beautiful little girl came into this world at 7.02am weighing just 4lb 11oz. When Florence was born it took just nine minutes to resuscitate her and she was put on CPAP to help her with a journey that had only just begun. We had our first cuddle before she was taken to neonatal for where life would lead to where she destined to be.
Within 24 hours doctors confirmed our little girl had very complex “life limiting” trisomy problem called Edwards Syndrome.
Florence had Trisomy 18
Edwards Syndrome (also known as Trisomy 18 (T18) or Trisomy E) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. The majority of people with the syndrome die during the fetal stage; infants who survive experience serious defects and commonly live for short periods of time.
Within 48 hours our little girl fought so hard and came off her CPAP and all forms of oxygen and managed to breathe alone.
Florence also had been diagnosed AVSD Heart alongside other abnormalities with her heart. ❤️
After ten extensive heart aching days in neonatal we decided to bring Florence home where we knew she belonged.
Amn't I cute...
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We had Florence at home for 7 absolute beautiful days where we spent so much family time together creating memories along with Florence’s big sister Isabella and facetimed her big brother too!
Unfortunately Florence didn’t get to meet all her other brothers and sisters but when they are old enough to understand we will always make sure a part of Florence lives within them.
Florence sadly passed away 11th October 2.25am at home in her daddy’s arms after an extensive 14.5 hour fight. 💔
"Keeping her memory alive, and fighting her fight. Forever our little warrior always in our hearts." 💜💜💜
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We as a family aim to raise awareness of Florence’s fight of trisomy 18 and share her story and help other parents that may be in our shoes in the future.
Keeping her memory alive, and fighting her fight. Forever our little warrior always in our hearts. 💜💜💜
You knew nothing but love...
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TRISOMY 18 or EDWARD's SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage before birth, but, quite contrary to recent reporting, studies have found that the average duration of survival for children who lived until birth with Trisomy 18 was 14.5 days; with 39% of babies surviving for more than a month, while 8.4% survived for more than a year.
Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111
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Links
The Experience of Families With Children With Trisomy 13 and 18 in Social Networks |
