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Sophia's story

by: 
Helen
Sophia

Our darling girl Sophia was our first born and my husband and I were the proudest parents imaginable when she arrived. Unbeknownst to us, Sophia was born with the genetic condition Alpha1 Antitrypsin Deficiency which was causing her liver to fail.

Being first time parents we missed the warning signs like pale stools and her yellow complexion was initially written off as breastfeeding jaundice. She was 6 weeks old when we detected something wasn't quite right and that's when the hospital stays and seemingly endless string of tests and procedures began. As the months went on, the hospital visits became more and more frequent and longer in duration. She was failing to thrive and had to be fed via a nasogastric tube as her deteriorating liver was unable to properly break down the milk. She was also vitamin D deficient which made her bones brittle and during one of her hospital stays, she broke her femur and thumb as a result. As time went on, she started to require increasingly more frequent albumin top ups until it became quite clear that without a new liver, she wasn’t going to survive.

On November 26th 2012 she was listed for a transplant and on December 18th of that same year, at just 9mths old, she received the gift of life. I never could have imagined that our first Christmas as a family would have been spent in ICU but it was the best present we could have wished for. Her recovery was a roller coaster to say the least and she fought off several bouts of rejection and an infection in her portacath she’d had fitted because of how frequently her veins had required access prior to transplant. She had an incredible team of doctors and coordinators and I don’t think we will never be able to even begin to express just how thankful we are for them or her donor, for what they did for our family. 

Sophia is now 6 (and a half she’d want me to add) and you’d never know to look at her what a fight she put up to be here today. She’s just the most vibrant and vivacious and loving little girl, it sometimes feels like it was all just a bad dream. Whilst she is still a little on the young side to fully grasp the gravity of what she went through, we will make sure she grows up to know just how special her donor was and how brave their loved ones were for saying yes to the gift of life. 
 


   

 

Nicky Burton