Thank you so much for Libby's quilt, it's absolutely beautiful and keeping her very cosy, such a lovely keepsake so much talent has gone into this for her, so thank you
Libby was prenatally diagnosed with a giant occiptal encephalocele at 21 weeks. This is a hole in the back of her skull in which her brain & CSF fluid leaked out into a sac on the back of the head. This left her incompatible with life.
However. Libby was born alive, she had her operation at 4 days old to remove the sac on her head, her MRI showed that the rest of her brain inside her head had not developed normally, it was damaged with parts missing.
Libby also developed hydrocephalus and has a VP shunt. She had seizures at birth and is on regular medication. She also has obstructive breathing because of her dysplastic brain stem and uses a nasopharyngeal airway. Libby requires suctioning and feeding into her gastrostomy.
Libby is nearly 3 years old, she cannot walk, sit and is severely visually impaired. However, she finds joy in her life and all things funny! She enjoys rolling over and noisy toys. Her favourite movie is Encanto.