Ava’s story

Ava's Story
Ava was born on the 5th August, 2008 with the rare form of liver disease, biliary atresia, as well as multiple congenital heart defects.

She underwent her first surgery at just 4 days old in Bristol Children’s Hospital to open a valve in her heart and from there she was transferred to Birmingham Children’s Hospital where she was to be diagnosed with biliary atresia, the narrowing of the bile ducts in the liver, which led to the poisoning of the organ. At 4 weeks she went to theatre to have the Kasai procedure. Unfortunately, for Ava, this wasn’t a success and she quickly entered end stage liver failure. She was too poorly to be at home. She was luminous green with jaundiced and suffered regular bouts of cholangitis. Her tummy then became so swollen with fluid that she could no longer sit, or move. She had regular bleeds due to portal hypertension and was on 24 hour infusions of drugs to control the bleeding. She was placed on the Transplant list at 5 months old weighing in at just 12lb. Every day we watched her deteriorate, she was literally slipping away before our eyes and all we could do was hope and pray that somewhere, someone would say ‘yes’ and be her hero.

On the 10th May 2009 we got the call. Ava was incredibly poorly, but she fought through the lengthy 13 hour surgery. Initially, the transplant was thought to be a success, but unfortunately, the blood supply to her new liver had been compromised. The organ simply couldn’t function. We are blessed to know that the wonderful donor who saved Ava went on to save 3 other lives, and the other half of the liver that Ava had, saved another too. We were beyond devastated, we knew that we had been lucky to have found the first hero, the chances of finding another were near on impossible. Incredibly, despite being in total organ failure, on full life support and suffering two cardiac arrests, as well as being told that we would soon have to say goodbye, our girl clung to life for 5 days… in the small hours of the 15th May, when the decision to turn off her life support was being made, another hero came forward. We knew it was a long shot, but thankfully the incredible intensive care team were willing to believe in Ava, just as much as we did!

By some miracle, the surgery was a success! Another angel donor and their family had made the selfless decision to save our baby’s life.

It was a long couple of months in ITU, with numerous infections, additional surgeries (including an emergency splenectomy in her cubicle) and breathing issues. She was left ‘open’ for several weeks to ensure the same catastrophic issues that she’s suffered before did not reoccur.

She returned to the ward on the 28th July, and we were allowed home on the 3rd August, 2 days before her 1st birthday….it has been an incredibly long, eventful year!

It will be a lifetime of care and medication for Ava, she still has issues with portal hypertension, her cardiac care, respiratory issues and super low immunity due to her anti rejection medication and the lack of a spleen but all in all, we are incredibly lucky to have been blessed with the most amazing life! She is happy, beautiful and full of the joy of life! She loves school, singing, dancing, going to rainbows, a being a real girly girl. She even loves seeing her wonderful care teams in the hospital, and has made some amazing ‘special tummy’ friends.

There are no words to express our gratitude to our incredible donor families, the amazing teams that we are blessed with, and the most wonderful friends that we have met along the way.

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