Tag Archives: down syndrome

Sometimes I Forget….

This article was shared to me via FB private message on my fan page, and I feel it’s worth a reshare. I had the same experience when I took baby Noah to a GP awhile back.

Doctor (notices he’s different) : “What’s wrong with him?”

Me: “He has Down Syndrome”

Doctor: “You know there’s a test you could have taken?”

Me: “Yes”

Doctor: “Oh, so the test failed?”

Doctors. You’d think they’d know better.

Hand Me Downs

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is kind hearted but stubborn. He immediately runs to check on sister when she is having a dramatic, I’m four and the world is over, meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say I love you.

He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music, he will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle…

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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

In Defence of Gammy’s Surrogate Mom

I’m sure most people reading this would think this was a strange angle to tackle on the whole Baby Gammy controversy. After all, why would Ms. Pattaramon (Goy) need defending – she’s been described as a “saint” and an “absolute hero” by Scott Morrison, the Australian Immigration Minister himself, right?

Baby Gammy and Goy - picture via www.dailymail.co.uk
Baby Gammy and Goy – picture via http://www.dailymail.co.uk

I’ve been following this story quite closely for obvious and not-so-obvious reasons – the parallels in our situations – Down Syndrome baby, AVSD (at least until the latest prognosis that says Gammy does not in fact have a life-threatening heart condition), the family’s street food stall, even photos of Goy and Gammy contrasting her brown skin against his alabaster white complexion, which evoke a sense of familiarity with some of the shots of Noah and me.

Yet, as the story continues to play out in the media, I’ve noticed that support for her is not as monolithic as it appears.

I’ve seen some rumblings about her motives in keeping the baby – insinuations that she’s using him to cash in, headlines that she told the agent she would keep “the dumb baby” (which had the effect of stirring the ire of the politically correct demographic), revelations that once she took on the surrogacy arrangement she moved up in the world from ramshackle hut to not-quite-so ramshackle unit and even had a bit of a spending splurge on nice handbags and clothes or whatever. I could go on.

She’s now hiding from the media thanks to the backlash. That’s a shame. She doesn’t deserve that.

I think it’s important not to lose sight of the facts in amongst all the outrage about Baby Gammy possibly being used as a pawn –

  • Goy kept the baby, she didn’t choose to abort him.
  • She did so despite her own financial circumstances, and despite the fact she’s not the biological mother.
  • She did all this for 6 months BEFORE the international media got hold of the story and money started coming in through donations.
Baby Gammy - image via GoFundMe
Baby Gammy – image via GoFundMe

I want to relay a story from a successful Chinese businesswoman I know. She saw that I was bringing Noah with me to trade at my food stalls, and she said she admired my strength. She then revealed her own past to me.

I have to admit in my elementary Cantonese and her not-perfect English (we communicate in a mixture of both) I never fully grasped the medical issues involved in her story. She told me that once upon a time, before her now-grown up children came along, she gave birth to a baby in China.

The doctors pulled her aside and said that based on their medical opinion, the baby had a 90% chance of developing a debilitating brain defect. They told her she had 2 options – to accept the baby and surrender to a life of dealing with his condition – or to leave him behind at the hospital and go home. She chose the latter.

I don’t know what happened to the baby – whether he automatically became a ward of the state, or whether he died, or whether she was in fact scammed by rich people who wanted a child of their own.

Ironically she relayed the story to me to show that she and I had something in common beyond the fact we’re both immigrant Asian businesswomen – the fact that she walked away and got on with her life was a display of the same kind of strength she sees in me.

Back to Goy and baby Gammy – I’m aware her critics are in the minority; I think most people understand. That’s not too different to my situation, as reflected in this extract from an email that was sent to a distribution list about me –

“…she has a disabled baby to whom she parades through FB on weekend markets to pray for sympathy , to show the world she was hard done by.  Everything that is going on with her life now or should i say ‘one screwed up life’ is of her own choosing…”

Siblings say the darndest things, don’t they? 😉 Oh and also, anyone who accuses me of sharing Noah for any reason other than to show that life can be a blessing even if you have a Down Syndrome baby – can go to hell.

You can see why I’m irked by any kind of negative second-guessing about Goy’s motives – I experience it myself.

In closing, I’d like to steal a line from Doreen Wilson, one of my Google+ friends. Her re-share of a Gammy news item I had posted carried this quote attributed to someone she knew –

“There’s something wise and maybe….right about accepting your lot in life”.

I’m not disputing it was hard for my Chinese businesswoman friend to abandon her baby, but that Goy chose to take care of Gammy despite everything, I think, deserves our admiration, not scorn.

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Baby Noah and me at the Markets.

Gratitude – Ester Wimborne

When I was about 15, we had a very special guest from Australia come stay with us in Temiang, Seremban.

She was considerate to a fault, and wrote us a detailed, thank you letter on the day she left to return home. It was lengthy, and it mentioned every person who had helped make her stay comfortable , even in the most negligible ways.

I read and translated it for my parents, and was annoyed by the end of it. Why? Because it didn’t mention ME. Unbeknownst to her, my stepmom had made me give up my third blanket for her before she arrived – we had been short on blankets, and I had three.

Three layers of blankets in non-air conditioned, tropical Malaysia is ridiculous overkill – it wasn’t like I was at risk of catching pneumonia by being deprived of one of them for a week or two. Fully aware that there was no way she could’ve known about it, the unintentional slight was nonetheless a big deal to my self-absorbed, chip-on-the-shoulder, teenaged self.

Why am I bringing this up? Because for the longest time, I’d been meaning to write a post mentioning all the acts of kindness I’ve encountered over the last 2 years in relation to baby Noah. I wanted to name names but was a little paranoid about unintentionally missing out on some people in the process, the way our Seremban guest had done. Clearly most people aren’t the self-absorbed, immature teenager that I once was, and would probably give me a pass, but my attempt at diligence (assisted by a healthy dose of procrastination) meant I kept putting it off. I wish I hadn’t.

I’m splitting this post into two parts because I want to give special mention to Ester Wimborne. Ester, a fellow market stallholder and Country Valley Dairy distributor, was one of the first people to reach out to me via Twitter even before Noah was born. I had been diagnosed with gestational diabetes during my pregnancy and was required to test my blood sugar levels after every meal.

I found that the chocolate mousse carried by Country Valley Dairy was one product that tested within the “safe” blood sugar range post-consumption, so I ate it with abandon during my pregnancy. I ordered them week-in week-out from Ester’s Sunday stall and asked her to pass them onto my Marrickville staff since I was (and continue to be) rarely there in person. She often gave me extra free samples of other products and always heavily discounted everything.

Our communications continued when Noah arrived – Ester was one of many people who compassionately messaged me online when I first revealed Noah’s condition. She was one of those who continued to show an interest even after he left hospital – regularly checking in via Twitter to see how we were doing, despite fighting her own since-diagnosed life-threatening illness.

We always meant to catch up one day but because we both ran market stalls at different locations, we never got around to it. Amidst my conflicted feelings about social media and my cynicism about some of its participants, Ester stood out as someone who was both genuine and generous in spirit – to me, she represented the best of cyberspace.

I’ve always thanked Ester on Twitter in response to her follow-ups on Noah; I’ve never thanked her in person.  In fact, in the hustle and bustle of running my own market stall it occurred to me a few weeks ago that the friendly woman I had served minutes earlier at Orange Grove Farmers’ Market might have been Ester – based on what I’d seen of her in pictures. And then I promptly thought no more of it, figuring I’d catch up with her another time at another market, when we both had more time to chat.

Ester was killed in an accident on the way to her Sunday Marrickville stall two days ago. The scenario resonates as a food producer and fellow market stallholder. I understand the early starts on weekends, the long hours and the “jumping in at a moment’s notice” nature of running your own business – heck, she wasn’t even supposed to have been working that day.

I wish I’d thanked her more fully, beyond my glib Twitter replies; I wish I had taken time to finally meet up with her in person.  Ester was an absolutely beautiful, larger-than-life, generous, kind-hearted spirit and my life is richer for having known her, even if it was only in cyberspace. I thank you for the love you showed, Ester, and I look forward to telling Noah about you one day.

 

Baby Noah’s Journey

Several weeks ago, in my first group meeting held with all the different medical teams at Westmead Children’s Hospital, I floated the idea of having Noah home by Christmas, notwithstanding any deterioration in his condition.

I’m grateful for the doctors and nurses who worked together to that aim, and on 17 December, baby Noah was finally discharged after spending the first 7+ months of his life at Westmead Children’s Hospital.

I’ve attached 2 videos here, one of which is a slideshow of photos taken since Noah’s birth, and the second, shot and compiled by Ian Chow (a second edit, with text added by me in some of the photos – the first edit was shared on Ian’s Vimeo channel a week or so back).

No amount of words or images could do justice to the gratitude I feel for the staff at Westmead and for the public support I’ve received especially via Twitter (many from people I may never meet in person).  I thank you all for keeping me going in the worst of times.

I’m loathe to single out people for praise but it’d be remiss of me not to mention Dr. Sandra Heck at Grace Ward who was instrumental, I believe, in saving Noah’s life in more than one instance.  Also nurse Rebecca (who couldn’t stop saying “oh my goodness” in the homecoming video) – Noah’s first diary entries were by her, and her care and attention towards him during his first 3 months were not unnoticed.  And of course, Cheryl, Noah’s Ward Granny, a volunteer who was a retired nurse herself, for spending Mondays and Tuesdays with him the last couple of months of his stay at Westmead.

Noah’s journey is by no means over; he has pulmonary hypertension and respiratory problems and has endless hospital appointments ahead of him.  For now, however, I am grateful to be able to end the year with this critical chapter of his life behind us.

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Baby Noah

Compiled by Ian Chow through stitching together some images and videos from my public posts regarding Baby Noah.

The doctors are aiming for a discharge date of Monday 17 December; he still has a couple of hurdles to overcome before then, but I’m hopeful that at 7 months, he will get to leave the hospital at long last.

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Letter to My Baby 7 October 2012

Dear Baby Noah,

You’re nearly 5 months old now and you’ve yet to leave the hospital.  You came very close earlier this week, when they transferred you out of the ICU for the first time, to the general ward.  Mommy was told you could be home within weeks; days even.  Just like the last time when you had just had the pulmonary band put in your heart and they sat me down with notes on how to tube-feed you when you came home for a little while (which didn’t happen because you got sick again) until your full heart bypass, this time they gave me notes and instructions on the ventilation equipment that would be coming home with us.  I guess I won’t be needing those anytime soon either because you got very sick and they had to transfer you back to the ICU.

Mommy often gets asked how I do the things I do.  Some people think I’m strong to keep carrying on with the business; others probably think it’s tacky that I look like I have too much of a good time goofing around online and with my crew while you’re sick in hospital.

But you know mommy visits you every single day that I can and we cuddle for hours alone except for the handful of visitors you’ve had since you were born.  I joke that the bills aren’t going to pay themselves, but the truth is I don’t need to be running such a complex, expansive business.  I could sell up and I did consider that for awhile before you were born; then I could spend every waking hour with you without worrying about staffing issues here and placing grocery orders there and disputing incorrect charges and wrong deliveries and dealing with compliance requirements and marketing and promotional activities and the fifty million other things that come with being a business owner.

Even with what was known before you were born, nobody could guess how much more confronting your problems have been – Down’s, AVSD, duodenal atresia, hydrops, pulmonary artery banding, chronic lung disease, pulmonary hypertension, post-surgery leakage between the right atrium and left ventricle – your case is as complex as has confronted the doctors at the ICU, at a hospital that takes in the sickest babies in all of NSW and even overseas.

You’ve nearly died 3 times now, first when you were delivered and they had to resuscitate you, then two middle-of-the-night calls for me to come in, once right after your bowel surgery and another time when your hydrops that they thought had gone away, came back.  Then there was the time when your heart started failing sooner than they had expected, and because you were too little, they decided to put in a temporary band around the artery to buy you a little time.  Mommy had a pop-up restaurant event happening that night so I couldn’t be with you during the surgery.  I couldn’t cancel because they didn’t give me enough notice about it.  So in-between speeches and smiling for the cameras mommy was calling the hospital for updates on a surgery that I was told beforehand there was a 5% chance of you dying on the operating table, though the test would be how you held up post-surgery.

Then they thought you could come home for a couple of months before your big open heart surgery, so one of the supervising nurses sat me down and went through the whole feeding tube thing with me because you would need to be tube-fed for a long time.  And other stuff like getting my borrowed baby capsule fitted by a certified mechanic, and how I would need to stay overnight at the hospital with you alone in a room, and spend time taking you out in a pram in the hospital grounds to acclimate both of us to having you home.  I was dizzy with excitement that night.

But the next day I was told your heart had started failing again and the neonatologists wanted you to have your bypass right away because they figured you’re never going to get better and they might as well risk it, but the surgeons refused to do the operation because they didn’t want to play the role of ‘executioners’ and wanted to wait.  And I was told if they waited you might in fact get worse and they’d never be able to operate, and also that you might need to be hooked up to an ECMO machine during the surgery because of your chronic lung disease, which would cause permanent developmental damage especially for someone with Down Syndrome.

Mommy has been confronted with the possibility of you dying even before you were born.  Everywhere I turned it seemed people thought I was better off terminating the pregnancy.  I was told most Down Syndrome babies don’t make it to term anyway; it was “nature’s way” of dealing with defects.   And when you had your first life-saving surgery 2 weeks after birth, I was told everything had gone well, only to be called in and told you were at death’s door.

They were running blood tests on you every hour overnight and your condition was deteriorating despite everything they tried.  Then mommy showed up at 4am and for the first time, it seemed the reading was marginally better.  The supervising neonatologist was on the phone with the surgeon and as a last resort had wanted him to cut you open again to make sure nothing was missed earlier in the day, that wasn’t showing up in the X-Ray.  They decided to wait until the next hourly blood test before they wheeled you into theater and again, it showed a slight improvement, and it continued to improve after that.  Thank God they didn’t cut you open again because I think that would have killed you; you were 2.2kg and so incredibly fragile.

To treat your hydrops, they had been giving you steroids and were shunting fluid out of your body.  They stopped the steroids when you had your first surgery, and sealed off the shunt because it looked like all the fluids had been drained and you were okay.  Then your tummy kept getting bigger and I was told you were fine; the doctors had been keeping a close eye on it and there was nothing to worry about.

At 5 weeks old, Mommy even posted a picture of you on Twitter and people were making jokes about your big tummy.   That night, I got another phonecall to come in and was told you were dying; that the hydrops had in fact not gone away and the fluid gathering around your tummy was now infected.  They resumed the shunting and the steroids (which they weren’t sure had helped in the first place – there’s no known, fixed cure for hydrops) and I was called into the office by the night supervising neonatologist and was told that it wasn’t looking good; that in fact if you were to have recovered from hydrops, you would have done so within the first 30 days.

The day supervisor started her shift and she called me in for a meeting as well.  She was even more blunt – she said that hydrops plus Down’s is in fact not survivable and I should arrange for someone to be with me for when you die, especially if I wanted to capture the event on video as a keepsake.

I demanded she backed up her statement with statistics, but she wasn’t able to provide any because she said, most such pregnancies don’t make it to term.  They’d stopped feeding you because you weren’t tolerating it – I’d been expressing milk every day and labelling them diligently in the ward freezer, and they weren’t being used, and I couldn’t bear the thought of emptying out the bottles if you didn’t make it, so I stopped that day.  I had also, after 5 weeks, just sent off your birth registration forms the day before after waiting for your health to improve, and now faced the prospect of having your birth certificate arrive in the mail after I had buried you.  I think that was the first and only time I broke down at the hospital, really.

Then when I got home that night I googled hydrops + Down’s and found a case in a parenting forum where the baby did make it, so that renewed my resolve.  And I chose not to make arrangements for when you died, just like I chose to turn down the offer of the free professional photography session before your heart surgery where the nurses would specially remove all the tubes and tapes from your face beforehand so I would have photos of you as a ‘normal’ baby in case you didn’t make it out alive.

And I reiterated to the neonatologists that palliative care was off the table; I wanted them to throw the book at you where it came to saving your life.  They told me from their experience most parents get antsy at about the 6-8 week mark, when life starts to get in the way of the hospital and that’s when most lose their resolve to fight.  And that I might change my mind after watching you scream for the hundredth time as they pin you down to try and draw blood from you for tests (you don’t bleed easily), and I might then just want to hold you and let you die peacefully in my arms.  I said it wasn’t going to happen; I was in for the long haul.  That I get that my life would be so much “easier” without you; that if it was about convenience, I would have aborted you during the pregnancy.  So the next time I was “sat down” for a chat, the neonatologist took a different tack.

He said that in his opinion, after everything you’ve already been through, he doesn’t think you’ll ever be a productive human being; you will need round-the-clock care, and whilst he knew from watching me that I would be up to whatever I was confronted with, that I needed to consider what would happen to you after I’m gone; that you would be a ward of the state; that therefore I should give in and let you die, which you would, without the heart surgery.

That made me mad.  He’s basically saying that you will be a burden on society and therefore don’t deserve to live.  And that’s why mommy does what I do.  I run my business from your bedside; I take restaurant reservations, negotiate business deals, do conference calls via Skype and Google Hangout, hold meetings at the hospital cafeteria, do media interviews etc. while I’m cuddling you in my arms.  I’m building a little empire for you, baby Noah, so that you will one day be the envy of “normal” kids, not the liability that the doctors predict you will be.

Now with this latest setback mommy will have to wait a little longer before I can show you off to the world.  But it will happen, my little Hakka warrior.  Just you wait.