Lillie-Faith was born with LCDH severe, she had her first operation at two days old but her lungs collapsed and the surgeons had to leave her open until she recovered. Day 5 she was able to have her surgery finished and every organ was back in place. Lillie had to have many blood transfusions to keep her alive.
At two weeks old they thought she was doing amazing and transferred to a hospital closer to us but 6 days later we got rushed back to Birmingham Childrens hospital put in a n e and had to wait for a bed on a ward. They couldn’t find out what was wrong with her so decided to open her up, that’s when they realised she had a bowel obstruction so just under a month old my baby girl had 3 major operations!
We finally managed to recover and 53 days in hospital from when she was born we managed to come home only to go back 3 days later as she had pulled her NJ tube out!
We struggled really bad with severe reflux and Lillie didn’t put on weight at all. Fast forward to the age of 4 Lillie underwent another major operation for reflux, unfortunately this hasn’t worked and the acid is burning her oesophagus away. At 5 years old they wanted to do a PH balance test but because she was tube fed and had many tubes up her nose as a baby there was too much scar tissue and it was unsuccessful.
She’s just turned 6 on the 22nd May and we are awaiting information on what the surgeons want to do next as she has that much scar tissue it’s near impossible to keep operating on her tiny body! Although our story may be scary Lillie is a bright, happy and outgoing princess who loves to dance and is doing really well school! Lillie-Faith will continue to fight CDH and the other illnesses it brings with it!
Date Of Birth: 2020-05-22
