Nancy’s Story

July 2nd, 2011 by Sharon

I gave birth to twins at 27 weeks in October 2010.  My daughter Nancy weighed 1lb 14oz, my son 2lb 3oz. At 15 days old my daughter developed NEC. She was transferred to a different hospital equipped to do surgery should she need it. Within 12 hours she was considered too sick for surgery and was on an oscillator as she was so swollen the ventilator couldn’t inflate her lungs. 3 days later and just clinging to life she was taken to theatre to remove the infected bowel. The surgeon gave her a 50% chance of surviving the op. She did, but the news was bad. She had only 15cm of small intestines left the rest had died. The surgeon said 15cm wasn’t enough for life and that she needed a minimum of 20cm. We were devastated. We stood over her incubator not sure whether to will her to fight or give in.
We discussed turning off her life support machine, the hospital felt it was too soon but advised us to place a ‘Do not resuscitate’ on her.
Nancy clung on and a few days later rallied, she was still horribly swollen, almost twice her size, but pink rather than purple. She had a broviac line inserted and two stoma’s.  Day after day Nancy slowly improved, the DNR was lifted and the plan became to sit and wait. The surgeon wanted to wait 3 months and see if, when he operated again to reverse her stoma’s, she had grown any more bowel. So on the 13th of January she went to theatre. 4 hours of surgery later we were told Nancy had grown an incredible 25cm more giving her 40cm. We were ecstatic!! She had a chance!
4 months later she was weaned of TPN and came home. She is on a special formula, is unable to suck so is NG tube fed but is growing and despite a few developmental delays she is thriving.
The whole experience was exhausting, terrifying and traumatic, having 3 children under three left us feeling guilty as we were unable to all be together at any one time. The twins were in different hospitals and only parents were permitted to visit.
Watching our tiny baby fight for life whilst we could only stand and watch is something few will ever truly understand. I don’t know what the future holds I hope she will live as fulfilling and as ‘normal’ a life as possible.

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