Zach was born healthy as far as we knew, he was a perfectly pink bundle of perfection. There were lots of difficulties from feeding to sleeping through at 7 weeks old. He would vomit in cycles and suffered febrile convulsions. We were told he was fine and felt we worried too much even though Zach was not our first child. He didn’t quite make his milestones, his head grew disproportionately to the rest of him but we reassured he was fine. After Zach having a huge regression in skills at 13months old and sleeping more than waking we paid privately to see a paediatrician. Zach was referrred the children’s hospital under the NHS for a head CT scan, at this point he had stopped giving eye contact and lost all of his baby babbling.
The results appointment was devastating and he was diagnosed with hydrocephalus (water on the brain) and a benign brain tumour which we now know to be a cerebello pontine lipoma (a brain malformation). Zach endured lumber punctures and tests, as well as his first brain operation to insert a shunt to drain his fluid, a tube into his tummy for feeds, all before he was 2 years old.
Zach has Autism, global developmental impairment, severe learning disability, severe language difficulty, hyper mobility, low muscle tone, focal and myoclonic seizures etc, he’s had countless invasive tests and operations and is due to have another operation to insert a tube into his bowel which is called an ACE. Zach is classed as undiagnosed so we don’t know his over all diagnosis to explain all of his difficulties, this makes his future uncertain. Zach is on a big study to look at his genes to try and get his very rare diagnosis.
All of the above doesn’t stop his cheeky ways and his beautiful smile. He is very loved and although he doesn’t understand our words, he knows he’s loved beyond words through our actions. Zach has a passion for trains especially Thomas the Tank Engine and loves monkeys, he has so many cuddly monkeys in bed, it’s hard to tell which is our cheeky monkey. We are proud to be Zach’s parents and no matter what struggles we have, we have each other 💙