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.

16 thoughts on “Letter to My Baby 7 October 2012”

    1. The article Letter to the Bbay”
      I am a Malaysian (though born in Sri Lanka) I grew up in Malaysia, left Seremban some 45 years ago Former student of Convent Birch Road (which has been demolished._ in search of a nursing career in U.K.
      Took a career in Nursing and migrated with my Engineer husband to the Bahamas his home .Have had a successsful career in the health field and have recently retired from active duty at age 64.
      I salute your strength Mother for your tenacity and dedication toppled with Love that I believe love is the best medicine and you definitely have shown you believed that your baby will live and overcome the struggles.
      I have seen the power of unconditional love Jesius showed me and I was blessed with two pre term grand son and grand daughter.
      I see miracles them example of my miracles, one is four and one is 6 months we are so impressed with love dedication of nurses and doctors who have done that with a pinch of Love and Prayers .So trust in God to bring a beautiful thing out of your struggles Blessings.
      Ampusam Rasiah Symonette

  1. You’ve brought tears to my eyes. I know we should be talking and tweeting about your awesome food, but it seems its your strength and courage with Noah that brings me to words. That and your puns. They were great. Life throws curve balls. This is a big one, and more than curvy. But you have the grace to get through. x

  2. The fight is worth it.

    I don’t say this to offer encouragement and support in a conveniently concise sound bite but because I’ve seen first hand that it is worth it. A close friend of mine with whom I’ve pretty much grown up with, and whose family I consider to be an extension of my own, has a sister with Down Syndrome.

    She’s in her 30’s now, still in the care of her loving parents and still is quite dependant on them but she’s also very much a person in her own right. She has her own friends that she socialises with, both with and without Down Syndrome. One calls her incessantly and they talk for hours on end over the usual things you’d expect young adults to talk about.

    She’s works a couple of times a week helping out in an office. She also attends TAFE learning business administration, which she often travels to and from by bus on her own. She has a special supervised social group that she participates in at least once a week that go out to various activities and venues, whether it’s the theatre, dinner or a game of footy. Rugby League is her favourite. She loves watching the games on telly. She also watches Home & Away, Neighbours, Australian Idol, Dancing with the Stars and a number of other reality shows.

    She likes small talk and hugs. Likes to talk about things she finds interesting or experiences she feels that are worth sharing. From time to time when she thinks no one is paying attention, she breaks into a silent but otherwise emotive conversation, something that her mother tries to discourage. Perhaps it’s with herself or an imaginary friend; I’ve never had the heart to ask. She can be headstrong and stubborn at times, but no more so than most adolescents.

    Her parents often go travelling with her around Australia and the rest of the world. She’s been to more places and experienced more cultures than I’ll likely ever know. Her mother worries about her. About her weight issues. About her development as an independent person. However, there isn’t even a question in her mind that having her wasn’t one of the best things in her life. You can just see it in her face. How she talks about those funny, embarrassing or tender moments, or just by the way she looks at her.

    The fight is worth it. It almost seems redundant to say this to you as you’ve done everything that you can to be there for Noah and you haven’t given up when other parents would have lost the will to go on. If there are concerns or anxiety towards what the future holds or how he will be, know that it’s simultaneously special and mundane; joyful and frustrating. It will not be easy and yet it’ll be worth every heart-felt moment, every tear, every disappointment and every proud achievement.

    I consider myself fortunate for knowing my adopted sister for the past twenty-odd years and I know that I am a better person for it. I would not trade a single moment or memory for anything in the world. I look forward to the next time I drop in on my second family, to share a warm embrace and talk about what she’s been up to and catch up on the goss of her favourite stars and reality show contestants.

    I have no doubt that the people that get to know Noah and are fortunate enough to have him in their lives will feel much the same way. I hope with your help that he’ll be able to beat every odd and obstacle against him and touch the lives of people that he meets the same way that mine has been touched with my adopted sister.

  3. Hi Jacki,

    The fight is worth it. Don’t listen to anyone who judges you, what do they know about your unique situation! Your strength is amazing and reminds me of my late aunt. My cousin was born with Downs Syndrome 51 years ago. She fought for him to receive the right medical care, attend school, learn to swim and enjoy the best life he could. He went on to have a long career as a Canadian swimmer winning medals around the world in the Special Olympics, in fact he only retired a couple of years ago. It’s too early to say what is possible for Noah but with your strength and his fighting spirit it will be the best it can be.

  4. Hi Jackie,

    It struck a chord deep in me when I read your post. I have been there before. I was that mother who slept right in front of the NICU door. I was that mother who stood my ground and said no when the doctors told me that my son wouldn’t make it and we should just switch the life support machine and ECMO off.. I was that mother who read everything that I could find on ASD, VSD, MVP you name it…I was that mother. I get you. I understand. My son was born with 7 congenital heart problems and was told by a nurse to prepare for his funeral. I told the nurse to fuck off and that this is my son and I know he’ll make it.

    That was 4 years ago…

    Today he is a typical 4-year old who loves soccer and play PS3…

    I cried when I read this post but I know Noah will make it. He is like you. Strong. Resilient. He is your son….

    He we are sending all the love in the world, hugs and kisses to you and baby Noah from me, Farah and my son Darius

    *HUGS*

  5. I’m almost in tears after reading your post, Jackie! I can’t imagine what this whole situation feels like for you but I admire your strength, your love for your child, both of you fighting to keep him alive. I am in awe. After reading this, I will be praying for you and him daily. God bless you both…

  6. My son was born with down syndrome and hydrops in April 2010 he is 2.5 years old and walks and talks and uses sign language. He still only eats by feeding tube. He was in the nicu for 6 weeks and on oxygen for 6 months. His heart was repaired at 16 months. I never blogged at the beginning it was too overwhelming. I started blogging when he was 1. Your blog has brought back many memories. Hoping there are more updates to come.

    1. Thanks for reaching out, Adina; great to hear there are people out there who have kids who’ve made it through similar challenges. The latest on Noah is that he will not need another bypass thankfully, like I had feared only a couple of weeks ago; he’s getting stronger now that they’ve eliminated the heart as the cause for his continued respiratory problems and put him on steroids. I’m hopeful he’ll at least be able to make it out of the hospital for a few hours on Christmas so I get to spend the day with him; that would be my best Christmas present ever.

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