The Lodger was diagnosed with Prader-Willi syndrome when he was just two weeks old.
Two weeks old.
Two weeks old and your whole future changes in the blink of an eyelid because of one deletion from one chromosome.
Throughout the whole nine months of pregnancy, we thought everything was fine. We just had the usual first time parent nerves about becoming protectors of a tiny human.
Looking back, I don't think anything could have prepared us for the bombshell of hearing the diagnosis- Prader Willi Syndrome.
We had spent one blissful hour with The Lodger on his birthday. I will treasure this short time forever. One hour of no knowledge of medical terminology to describe your baby. For that one hour he was just The Lodger, perfect in every way.
He was quickly whisked away to the neonatal intensive care ward where he would spend the next three weeks.
The Lodger had hypotonia. Hypotonia?We'd soon learn the medical terms for all the symptoms associated with PWS.
Hypotonia = low muscle tone.
The Lodger could move his eyes and nothing else. He couldn't move his arms or his legs. He couldn't cry. He didn't make a sound.
When you're in NICU, you live in a bubble and quickly learn the hospital routines and rotas, amidst learning how to be a parent of a baby who needs a little bit more care and attention than most.
The Lodger required oxygen from the start, as his muscles were too weak so he struggled with breathing and keeping his oxygen saturation levels high.
Unlike most PWS babies, the Lodger took a bottle- although it took a lot of work and feeding techniques taught to us by the nurses caring for him. Feeding the Lodger was on a schedule from Day One, even before the diagnosis of PWS.
Prader-Willi Syndrome is strange. Failure to thrive at the beginning where babies struggle to feed and gain weight and then anywhere from two years old onwards, an insatiable appetite and rapid weight gain.
At 3 weeks old, The Lodger was finally able to come home- off oxygen but with a monitor, oxygen canisters and an oxygen machine at home.