Shortly after Christmas 2015, while scrolling through a local Hong Kong Moms group, we came across a post that stopped us in our tracks. And what we read moved us to tears.
It was an eloquent note of gratitude by Christina Paul, thanking everyone for their “kick-ass support” for her miracle baby - Bailey who had recovered from emergency open-heart surgery. Staring back from the Facebook feed was gleeful Bailey, bright-eyed, sporting a Santa hat....wearing a Baby Hero onesie! A few days later, we wrote to Christina to check in on Baby Bailey, and she kindly agreed to share what she learnt during the harrowing experience.
I am UK-HK Eurasian, and have lived and worked mainly between London and Hong Kong. I wanted to be an “artiste” as a young girl! I studied visual and theatre arts, went to dance school, but eventually embarked on a career in holistic therapy and positive psychology. I learnt that creativity can be expressed in all sorts of ways, and therapy is where my authentic self feels most at home.
My husband and I had a group of common friends that we've each known for years, but it wasn't until 2011 that we first crossed paths. We were both unavailable at the time so I guess you could say it was love at second sight - 5 months later, our single selves met again at our friends birthday party, and 6 months after that we were engaged!
My pregnancy was amazing. No unpleasant symptoms, lots of energy and I felt pretty sexy! Childbirth was a whole other story! I'd been doing the whole hypnobirthing thing so might have had slightly rose-tinted expectations of breaaaathing him out in lotus pose etc. 12 hours of reasonably zen-full labour and 2 canisters of laughing gas later, I was induced and more like screamed him out.
Bailey seemed perfectly healthy at birth. At our standard 5-day paediatric check-up, our Doctor told us he could hear a slight heart murmur, but lots of newborns have that as their hearts adjust to the outside world, so we weren't worried. Nonetheless, he referred us to a paediatric cardiologist, just in case.
In the interim, we saw a couple other paediatricians, neither of which felt there was need for further investigation. The cardiologist appointment was the following week, and I remember we nearly left the clinic before seeing the Doctor because of the wait (plus he's perfectly fine anyway, right?), but just as we were strapping Bailey back into his carrier the Doctor called us in. After a long, silent echocardiogram (ultrasound), he tells us our son has 2 medium-sized holes in his heart. We were to return in 3 weeks by which point his breathing might become laboured. It was all so as-a-matter-of-fact. The report said 'watch for heart failure'. How rude, I remember thinking.
We decided to get a second opinion from 'the best paediatric cardiologist in town', and I was honestly expecting more optimistic news. Instead, we were immediately rushed into Queen Mary Hospital (in Hong Kong) for emergency, 'ultra high-risk' open-heart surgery. Not only were the holes much bigger than we thought, he had a dangerously narrowed aorta, and was in heart failure. Bailey was 3 weeks old.
Our worst moment was when, at 2am, a couple hours after the operation, I watch my husband take a call from the hospital - he couldn't stand straight and was choking up. I thought it was all over. Bailey had gone into cardiac arrest and they were trying to resuscitate him. 45 minutes later, after signing papers that brought us dangerously close to the dreaded ECMO machine, Bailey's heart came back.
As horrendous as that time was, the silver lining is that we've never felt so loved. The outpouring of social media support was incredible, from close friends to complete strangers, prayers and positive energy from all faiths and modalities the world over (including a nunnery in Florence and a temple in India!). Every message and prayer and positive thought was a source of strength for us. I call it Facebook-therapy!
Everybody deals with things differently, but for us, in this particular scenario, being open about what we were going through I think gave people the 'permission' to rally round, and that support made such a difference to us. It really taught me not to shrink away when people are going through dark times - we think we have nothing to say, or that we're intruding, but often the best way to support is just a simple, 'we're here, we're rooting for you'. It's not about promises or platitudes, just presence.
Also, be kind and gentle with yourself and your partner. No blaming or shaming. Eat well, sleep whenever you can. And remember, whether you choose to deal with it publicly or privately, you are not alone, there are others out there who have been or are going through something similar. Today's digital world makes it so much easier for us to access the right kind of support and solidarity.
Baby Hero Bailey wearing our Holiday Reindeer onesie
Finally, I think it's important to self-advocate. As new parents, we so often hear people say, you're first-timers, of course you're worried. I'm sure 99% of the time there is nothing to worry about, but looking back on the string of close-calls we had, I'm so glad our first paediatrician made his 'just in case' referral, and I'm so glad we sought out a second opinion, which landed us in hospital JUST in time. It's not about being neurotic and distrusting; it's about listening to your instincts and doing your research so that you can have informed discussions with your doctors. For example, with Bailey, it was taking ages to wean him off his feeding tube, and his heart meds seemed to be causing side effects. My husband and I felt strongly about approaches that deviated somewhat from protocol, so with the doctors' permission we trialled some other options, and in both cases, we achieved important breakthroughs.
After 3 months of being in and out of hospital and struggling to gain weight, Bailey did an amazing 180 in January and is now better than ever. He's feeding well, sleeping well and even travelling well. The smallest things feel like milestones to us, every bottle he finishes, every gram he gains, every new sound and smile... It could all have been so different. I guess that's the silver-lining of surviving experiences like ours, the ordinary becomes very extraordinary.
Having been through all this, we feel so, so lucky to be living in Hong Kong - life-saving open-heart surgery, 2 months of round-the-clock care, a host of specialists and therapists, all for HKD50 a day. There are many places in the world where this kind of medical care is not available, and it's heart-wrenching to think that precious little lives can suffer because of it.
Baby Hero Bailey wearing our Panda footie
That's why we love what Baby Hero are doing, spreading the love so that babies and mummies in less fortunate parts of the world have a better chance at life. My husband came across Baby Hero last December when Bailey was still in hospital. He read about their wonderful story, bought their gorgeous reindeer onesie, and it was one of the first things Bailey wore when he finally got out of his drab hospital dress into some festive gear upon his returned home!
Read how every Baby Hero purchase helps #ChampionLife in rural communities of Pakistan and Kenya.