I was recently approached about having baby Noah’s story featured online and to that end I was asked to provide a spiel to accompany his photos.
Although I mostly post personal stories at my other blog – www.SerembanGirl.com – I thought I might reshare this here since Noah is such an integral part of my business.
Some of you have followed Noah’s story since Day One but many others don’t know about him (as evidenced by the regularity with which I get asked when I’ll open another restaurant – FYI I quit my restaurant because of his illness).
The following is written in the third person but by me (I like when people ask whether I write my own content because it presupposes that I can actually afford writers).
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Born in May 2012 with Down Syndrome, non-immune hydrops, AVSD and duodenal atresia, Noah spent the first 7 months of his life in NICU (neonatal ICU) and PICU (pediatric ICU) at Sydney’s Westmead Children’s Hospital.
Against all odds, Noah recovered from a prolonged bout with hydrops fetalis – a rare condition with no fixed cure that according to the doctors was not survivable for Down Syndrome babies.
During his time in the ICU Noah also underwent a lifesaving bowel surgery and two open heart surgeries along with a number of other exploratory procedures.
Noah’s condition improved gradually and in November 2012, his mom raised the possibility with his doctors, of having him home by Christmas.
Because of his stormy and complex medical history, there were numerous medical teams looking after different aspects of his care.
Confronted with this request from Noah’s mom, all the medical teams rallied together and coordinated their efforts to help Noah meet the milestones required for him to be discharged.
One week before Christmas 2012, Noah was finally considered stable enough and he made it home from Westmead after spending his first 217 days in hospital.
Video of Noah’s homecoming –
Today, Noah can often be seen in his portable cot at places where his mom runs her Malaysian food business, winning the hearts of customers and passers-by with his jovial and happy demeanour.
His mom, Jackie M, has made it her mission to help raise awareness of Down Syndrome and to provide inspiration and moral support to others and in particular to single parents through Noah’s story.
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ps. (back to first person)
This week was a huge milestone for both of us, because Noah finally got a place in childcare. Whatever reputation I have as a Curry Nazi, warranted or otherwise, I nonetheless worried about how he would fit in because he’s about half the size of the kids in his age group and very developmentally delayed.
Turns out he loves it and is having a fantastic time there, so he’ll be spending Mondays and Tuesdays at childcare from now on.