Parent-to-Parent NICU Stories – Interview

This is a link to an interview by Shante Nixon, where I talked Live on Air about my experience with Baby Noah when he was in NICU (Neonatal ICU). Shante is an advocate for helping parents prepare for their own NICU experience and she contacted me recently to ask if I could share my story. Noah spent the first 217 days of his life in hospital – 3 months each in neonatal and paediatric ICU and a month in general ward. This was the first time I brought up some of the backstory to our journey. Some of it is controversial and some, I hope, helpful.

If you can ignore the 283 “you-know”s I muttered, this was my most revealing interview ever; if you want to skip ahead, I’ve added the Timeline at the bottom of the video.

Timeline –

1:44 – Down Syndrome
3:02 – why I share about Noah
6:32 – hydrops
8:00 – emergency caesarean
8:33 – “people who need people”
28:00 – Google Australia calls
30:00 – “we can’t fix Down Syndrome”
31:20 – motivation
34:40 – “rowdy Arabs”
40:00 – death
45:40 – advice to other parent-entrepreneurs
50:55 – parent-to-parent advice
52:45 – gloating

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2 thoughts on “Parent-to-Parent NICU Stories – Interview”

  1. Hi Jackie, i recently gave birth to a bb girl on Sept5. She is a SGA bb, when she was born, she was just 780gm @ 34weeks. I went thru emergency C-sec cos Doc found my amniotic fluid was very little. Then i transferred my bb to University Hospital (KL) due to facilities & $$. The docs there found out besides being SGA, she also has a hole in the heart (same like Noah) AVSD (11mm wide) with DS, too. She is now only 1kg, doc said she must be at least 3kg in order to do heart surgery. I really dont know what to expect/hope/pray any more. Now just have to wait for her to gain weight before she is 5 mths old, otherwise they will not be able to do heart surgery after that. She would have to live with the hole in the heart for the rest of her life.

    1. I’m very sorry to hear about what you’re going through; thanks so much for sharing. If it’s any help at all, what I found gave me strength was to find as much information as I could online and to check forums to see what other parents’ experiences are like. I’m sure that’s what you’ve been doing as well. Another thing that helped me (as mentioned in my video) was to remember to stay strong for my baby, and to be his advocate – because sometimes it felt like all the “experts” seemed to think he was better off being denied treatment and being allowed to die – I had to stand firm and fight for him despite feeling like I was the lone voice in the wilderness. At the back of my mind, however, I did consider the worst case scenario and I did make a conscious decision that I would be at peace with the outcome should it come to that – but I also consciously decided it wasn’t for me to play God and pull the plug on my baby on the presumption that it was more humane to let him die. I told the doctors to throw the book at him as far as treatment was concerned. All the best with your baby and do let me know how she turns out – I can be reached at jackie (at) jackiem (dot) com (dot) au .

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