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Lilly's biliary atresia story

Written by Jade on 14/03/2017 14:53

Lilly was jaundiced and poorly 24 hours after she was born. With her being my second I knew straight away that something wasn’t right.

She was turned away by four professionals until a midwife did a routine heel prick at the 2 week check-up, and after a lot of tests and long waits in hospital Lilly was diagnosed with biliary atresia.

Lilly biliary atresia

Even though Lilly was diagnosed at an early stage she has portal hypertension and cirrhosis. She had a successful Kasai at nearly 4 weeks old. Thankfully she is doing well and she’s nearly 2 now.

I want to share Lilly’s story to tell parents that if your newborn is jaundiced for more than two weeks demand a blood test. Lilly had a few symptoms every parent should look out for, including jaundice in the white of eyes, pale stools, dark urine, and one symptom which stood out more than others which was that she was hungry constantly and being sick a lot.

Lilly biliary atresia

Thank you Jade for sharing your story. Children’s Liver Disease Foundation campaign for all new parents and health professionals to be yellow alert and aware of the early signs of childhood liver disease. If you would like to share your story please email families@childliverdisease.org.