I was induced at 38 weeks due to IUGR. Esme was born with hypoglycaemia and hypothermia and was taken to NICU. She suffered fits and non breathing episodes. Her extremely small size, unusual facial features, floppy tone and high pitched cry were noted and chromosome testing was requested.
By the time her diagnosis was confirmed a few weeks later, ESme was very poorly again with pneumonia. She has had frequent episodes of pneumonia due to aspirating.
At the age of 17 months, Esme went into a coma as a result of hypoglycaemia. We thought we'd lost her but she came back! Following that, she had frequent episodes of suddenly dropping her blood sugars. Thankfully that is much better managed now she has a gastrostomy and a proper feeding regimen in place.
An MRI scan at the age of 3 confirmed leukodystrophy and other brain abnormalities.
Esme is now 7. She's a very happy. sociable little girl that can charm anyone into tickling her hand! She continues to have a lot of medical problems and her prognosis is very uncertain. We just take each day as it comes and cherish every moment