by Amelia & Charles Burfitt
“We must be willing to let go of the life we planned so as to have the life that is waiting for us”Joseph Campbell.
When we got married, we planned a busy and productive life. Whether it be becoming savvy, successful investors, living abroad with stacks of kids or each pursuing successful, satisfying careers we knew we wanted a lot to flourish from our marriage. We were confident and proud, we imagined and planned a lot of things for our first 10 years. But as they say, “if you want to make God laugh, tell him your plans.”
We fell pregnant 4 months in and had our beautiful little girl Cecilia Therese. Nine short months later, and we were expecting again. I was thrilled, I wanted a big family and anyone who knows me knows I don’t like to wait around for things I have my mind set on!
Raphael was born in September 2018, he was a much anticipated little one. I was very anxious for a VBAC (normal birth) due to a not pleasant emergency caesarean experience with Cecilia. Because of this we planned the whole pregnancy for this birth. It was a long drawn out labour, but a quick delivery . We were so hung up on the process of getting him/her here that all preparation was around the birth itself. In hindsight it seems that we hardly even imagined our life with our second little one. Well, the birth was the least of our worries!
Little Raphael was born a deep purplish colour – and it didn’t change. He was whisked from my chest for CPR, a excruciatingly long 10 minutes for my husband watching over a sea of doctors and nurses trying to get our little boy breathing. As soon he cried it was straight off to the special care nursery. We discovered in those next few hours that Raphael had Trisomy 21 (or Down Syndrome) and 3 holes in his heart (2 very large – an ASD and VSD and one other smaller ASD). These holes had also caused valves not to form properly. He would need open heart surgery within the first few months of life or he would not survive his first year.
Raphael was beautiful – the blondest newborn I had ever seen, his eyelashes even stood out against his skin. Honestly for the first few days I could have sworn he was albino. Sadly, I spent the first night away from him as he was transferred to the Neonatal Intensive Care Unit (NICU) at Westmead Childrens – the NICU for the most complex newborn medical cases in the state. Hard to part with your little soul after having just met them for the first time! However I was high on endorphins from the birth and excited to be discharged first thing in the morning to see him.
Once at Westmead we discovered that the heart was not Raphaels’ only issue. He stopped breathing completely six times in his first three days requiring resuscitation, and was put on life support twice. On day 5 he went under for exploratory surgery to find the cause. They found he had obstructive sleep apnoea (where your airway blocks while sleeping and stops you from breathing) and tracheomalacia (a floppy airway). Luckily, an insertion of an artificial airway in his nose solved the problem temporarily by splinting it open, and we hope that in time his airway will grow bigger and we will no longer need the tube so that he doesn’t need corrective surgery or a tracheostomy inserted.
The first week was tough to say the least. We spent each and every day by his bedside, while new issue after new issue was discovered . Every tiny vein in his body being bruised to take blood tests, his face swollen up from the drugs, antibiotics for a feared sepsis, a translucent leukemia scare, jaundice, low blood platelets, multiple blood transfusions, aspiration when feeding (meaning milk would leak into the lung) and eventually the complete loss of the suck reflex which means out little man will be tube fed for the foreseeable future. Each night we headed home markedly and depressingly empty-handed, leaving our baby in the extremely competent hands of the nursing staff, but hands that were not out own. We would arrive home to sleepless nights, minds reeling from long intense days while our bodies ached from tiredness and yearned for rest, not to mention recovering from the birth. We received numerous 3am phone calls from the hospital whenever Raphie took a turn for the worse and to gain our consent for major procedures. Nothing makes your heart beat faster than that phone ringing in the dead of the night.
Weeks turned into months, it was a time that I can’t even put the emotions and exhaustion that filled my body into words. More issues; blood found in nappies, tests, more tests, Raph not gaining any weight, and then going into heart failure, pumping milk every 3 hours around the clock, panicking whenever I fell behind in the crammed schedule of expressing milk and feeding Raph, seeing photos of friends delivering healthy babies that they could take home and cuddle. To say that it was an emotional rollercoaster doesn’t even scratch the surface of what we went through at that time. We couldn’t even hold our baby half the time and when we could it was awkward and uncomfortable managing all the cords, tubes and masks. They told us we would be here in NICU until after his surgery around the 3 month mark – if he could make it that far.
In the midst of all the health scares, his down syndrome diagnosis was completely forgotten, rarely even mentioned by doctors and just an after thought for us. All we knew is we just wanted our baby to survive. When we did think about the Down Syndrome, initially there was lots of joy. Happy anticipation, laughing about potential future personalities and imagining cute interactions. After a few weeks that joy was sometimes tempered by fear and apprehension of the unknown – potentially hard – life ahead and grief for the loss of so many goals and ambitions that we had set for ourselves. None of these feelings were ever allowed to linger long as another health scare would pull our heads back into reality of how fragile and precious his life was.
Around the 2 month mark he took a turn for the better, and started to gain weight. We managed to negotiate some precious weeks at home before being brought back for surgery. We were sent from the chaotic NICU to spend 11 days on the Cardiac Ward before finally, finally coming home.
Here we are at home while we wait for the big surgery. Charlie and I have both become full time nurses to look after our little man. We came home with 3 machines, multiple daily heart medications, replacement feeding and airway tubes, dozens of policies and education sheets and about a million syringes. For the moment his needs are complex. However, he is booked for open heart surgery on the 5th February when hopefully we begin to correct one health issue at a time and life will get a little less worrying. We try to adapt as much as possible into our normal lives, and amazingly, I feel it’s nowhere near as hard to do that as I had anticipated. There is a lot of work that goes on behind closed doors to be able to live the ‘normal’ life – but we manage it! Even more than that, we have been blessed to attend many social functions and have been on 2 short summer getaways.
We love our little boy with more fervour than you could imagine and are confident that the worst is now behind us. Raph has already added so much to our short married life together, and we can’t wait to see what lies ahead! This is our story, and we both want to share some snapshots and musings along the way about our life full of wonder and what it all means. While there is a lot of hardship in this world, there is infinitely more beauty, and it is important to stop and appreciate this fact. GK Chesterton once said, “The world will never starve for want of wonders; but only for want of wonder.” Raphael hasn’t been around for an awfully long time yet, but there is little doubt that he is a true wonder.
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