Emily Elizabeth
Our little star...
Katie's little baby Elizabeth was diagnosed with Trisomy 18 and lived for 26 days
"Emily was proving everyone wrong, we made it past the 4 days, past the week, two weeks and three weeks but Emily ran out of fight and passed away at 26 days." |
I had a fairly normal pregnancy up until 36 weeks when it was discovered that my baby was smaller than she should be. I had a week of scans and tests until it was decided to induce my labour. My labour was induced and ended with an emergency c-section. Emily was born at 9.56pm, weighing a tiny 1.97kg, 4lb 5oz. Emily was rushed to the Neonatal unit to receive the care that she required.
I finally met Emily 14 hours after she was born, but the occasion had a grey cloud hanging over it because we had been informed that Emily possibly had a rare syndrome called “Edwards” or Trisomy 18, (not that any of that mattered to me when I had my first cuddle with her). So small and tiny yet absolutely perfect, I was a mummy to a beautiful, amazing and strong little girl. I couldn’t have been more proud.
Beautiful little Emily
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The following day it was confirmed that Emily had Edwards Syndrome, a syndrome that was not compatible with life. We were advised that Emily might only survive for foir days. I felt my whole world turn upside down, but I was determined that I was not leaving the hospital without my beautiful daughter.
That day I packed up our things and we took our first ride home together. We had a wonderful christening that evening with friends and family. Emily enjoyed all the attention. The next day we met her nursing team: "Children with Complex Needs Nurses". The matron of the team, Teresa, came to visit us at home and brought with her everything we needed to care for Emily at home.
Emily and mammy and daddy...
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Without the nurses we would have been unable to bring Emily home, because they were there for us 24/7. The first night at home the nurses came out on more than one occasion, as we were worried about Emily. The nurses reassured us and helped us to settle Emily and our own nerves. From then on we knew that whatever we needed, day or night, the nurses would be there for us. They made daily visits and phone calls to check how Emily was doing and also how her mummy and Daddy were coping. They came out whenever we needed them, even at 1am on a Monday morning as a certain little lady pulled her feeding tube right out of her nose.
Emily was proving everyone wrong: we made it past the four days, past the week, two weeks and three weeks even! But Emily ran out of fight and passed away at 26 days. Those were the most valuable and precious 26 days of my life. I owe so much to the nurses who helped me have those days with Emily. The nurses allowed Emily to meet her grandparents, aunties and uncles and little cousin, meet her godparents and all the wonderful family and friends who loved her so much.
... and with her extended family
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Because of her impact I have decided to make something positive out of this awful situation and to raise funds for the Children with Complex Needs Nurses and families across the UK.
"Those were the most valuable and precious 26 days of my life and I owe so much to the nurses who helped me have those days with Emily." |
Petition to the UK Government
Katie has started a petition to the UK Government to end the terminology "Incompatible with life" Get more information on it here
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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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