Imagine a newborn baby, “a blank canvas of possibility”. They could grow to be anyone they want to be, or do anything they want to do…. Then imagine a doctor giving you a diagnosis for your precious baby, with a seemingly endless list of things that they won’t achieve and the challenges they would face, just as they are about to start out in life.
12 years, 6 months and 15 days ago our Ella entered the world. Our second child, she was 5 days late in what was an otherwise ‘normal’ pregnancy and had to be induced.
Out she came without so much as a whimper, and before I was given the chance to hold her, she was whisked away to the Special Care Unit with the nurses muttering something about her needing oxygen. I sat there on my own completely oblivious to how our world was about to change.
At 4 days old Ella was subjected to various blood tests. We were then taken into a small room at the Children’s Hospital, filled with doctors, specialists and geneticists poking and prodding our newborn baby and asking us what seemed like a million questions.
Ella was diagnosed with Prader-Willi Syndrome at 4 weeks old.
Early Life / Stage 1 of PWS
Ella was extremely ‘floppy’ at birth – also known as ‘hypotonia‘. This was probably the most telling sign that not everything was quite right. By floppy, I mean if you held her by the hands and pulled her body up, her head remained on the bed – she had absolutely no strength of her own to lift her head.
She was too weak to feed, so I expressed milk and she was fed via a tube through her nose for the first 4 months of her life. We’d practice giving her the bottle but it would take about 45 minutes for her to drink 10ml of milk. Those first few months of her life were dedicated to feeding her (ironically) around the clock: expressing, feeding, sterilising, sleeping…
She loved to sleep, never cried and if she did make any noise, she sounded more like a tiny kitten. Apart from the feeding difficulties, Ella was an easy baby.
By her 1st birthday, Ella still couldn’t sit on her own or hold her own head up. Her hypotonia was probably on the more extreme end of the spectrum, so we met very little of her milestones in the first year. Despite these frustrations, the countless tears shed – especially in the first few weeks of her life – and the concerns about her future, our little miss sunshine had completely won us over.
We gradually came to accept that what the future held for us as a family was uncertain, so we learnt to take each day and challenge as it came.
Conn3cted are a digital technology agency that create beautifully designed digital products with a clear focus on a better customer experience.
Emily Garcia is our CXO and mother to 3 beautiful girls.