Who Is Baby Noah?

The body of this post was written in early 2015 for a media outlet requesting a spiel about baby Noah, then reposted on my main website (www.jackiem.com.au) with the following intro >>

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.

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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.

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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 Baby 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.

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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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Noah’s Schedule

I don’t like playing the pity card about what it’s like to be a single parent raising a special needs kid.

Please don’t take this as an attempt to elicit sympathy; this is to show those who doubt my parenting obligations that in fact, Noah is anything but neglected.

This is Noah’s typical schedule –

Mondays & Tuesdays – 2 full days at Bronte Early Education Centre with dedicated support worker.

Wednesdays – Fortnightly visits from a special needs keyworker to assess and plan Noah’s ongoing developmental needs. Special needs playgroup from 10-12 if we have no other plans for the day.

Thursdays & Fridays – 2 full days of preschool in a supported environment with in-house speech therapist, child psychologist and occupational therapist. 

Fridays – Fortnightly speech therapy

Sundays – Church & Creche/Sunday School

This is in addition to revolving door hospital appointments and diagnostic assessments covering all aspects of his medical and developmental needs –

  • cardiologist
  • pediatrician
  • GP
  • sleep specialist
  • hearing tests, eyesight tests, physical therapy, dental work, IQ tests etc.

Noah starts kindergarten at a special needs school next year. His opportunity to experience the world outside the coccoon of special needs therapy is going to lessen significantly once that happens.

I don’t just bring him along to the markets because special needs childcare is expensive and hard to come by (which it is).

I do it also so that he has the opportunity to experience the real world, remain integrated in society, interact with the general public, and observe mommy at work.  Most importantly, he thrives at the market, as you can see from the photos I’ve posted here and on Instagram.

Noah thinks he lives a fabulous life. He thinks he is a little prince and the world is his oyster.  Why would anyone presume to know otherwise?

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