He was badly jaundiced at first, but his observations and hearing were fine, so the hospital discharged us. But, I continued to have this nagging feeling - call it mother’s intuition - that something was wrong.
His eyes would judder uncontrollably, he would arch his back as if in pain and at six weeks seemed to have completely forgotten how to suck on his bottle. He was gaining weight, but his head was growing disproportionately to the rest of his body. Then at 12 weeks old he still wasn’t smiling or holding his head up.
Our health visitor agreed he should be checked and after lots of testing, including genetic tests and MRI scans, we eventually had a diagnosis - TBCK syndrome - an incredibly rare and complex neurogenetic disorder.
We came home from hospital having heard Drae’s diagnosis shell-shocked; our 12-week-old baby boy was on a feeding machine and having his breathing constantly monitored, while we tried to take on board the implications of his condition.