August is a special month for us. Our first-born daughter is an August baby as am I. So when Asher decided it was his month too, it felt right.
After four days in hospital, our little man was finally induced on 15 August. Asher was just 2.7 kg and although a straightforward birth, he was whisked away to the resus table having been unresponsive and struggling to breathe.
It's a unique kind of emotional roller-coaster to have the joy of having watched your wife courageously give birth to your son, only to feel a helpless fear immediately following as the crash team is called in to save your baby's life.
But that they did, and as his APGAR score raised so did our spirits. Yet something was still not right. A nasogastric tube could not be passed to his stomach and after a few calls to supporting specialists and a very experienced midwife, the team rightfully suspected a Tracheosophogeal Fistula (TOF).
A TOF is a congenital malformation where the oesophagus does not connect normally to the stomach yet the trachea abnormally does. This clearly needs immediate surgery, without which the chances are nil.
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(L) David & Juanita with Asher at John Hunter Neonatal Intensive Care Unit, Newcastle; (R) Asher Clif Keir
And so Asher went on his first helicopter ride, Port Macquarie to the John Hunter Neonatal Intensive Care Unit (NICU) with NSW Newborn and Paediatric Emergency Transport Service (NETS). The NETS team were genuinely incredible and safely delivered Asher to Newcastle. While transferring a sick baby like Asher is crucial, this is where things can get so difficult for a family. Juanita was unable to fly having just given birth, but then if I flew with Asher we would have ended up in Newcastle without a car. In normal circumstances that could be managed, but this was mid-COVID lockdown - we literally required a medical certificate just to travel to be with our son. Unfortunately, Asher's story is one of deep heartbreak. He soldiered on with his cute little snorkel (CPAP hood) but during his surgery to repair his TOF, he sustained injuries he could not survive. An afternoon of hope and distress led to Asher going on his second helicopter ride from Newcastle to The Children's Hospital at Westmead where further testing confirmed the worst.
We sat with Asher and cried like never before. Not quite 72 hrs after he was born, I had my first chance to hold my boy. I stared at him, trying to reconcile in my mind how he could be laying there, so peacefully yet without any chance of survival.
In my arms, at 11.50pm, he started to decelerate yet he was to stay with us for another hour. This was deeply special to me, because Asher and I now share that day, as it is also my birthday.
The clock ticked over to 18 August and as our tears ran dry, we switched off his life support and said goodbye having known him only three days.
Giving is something very important to Juanita and I. In the hours following the loss of our son it was very clear that we wanted to set up a donation page. We did not want flowers or gifts. We wanted Asher to have a legacy - to impact others positively so that his short life would not be a waste. We set up Asher's Gift, and our friends, family and community came together and have raised over $30,000 for the Humpty Dumpty Foundation.
(L) David, Juanita and Lavali on their healing roadtrip around Australia; (R) Lavali and Vela
When your life is turned upside down on a dime, like ours was - it really highlighted the fact that life is too short. It was evident that we all needed time away as a family to grieve, heal and live life to the full so we hit the road for a three month roadtrip around Australia.
You can’t be cured from grief. You don’t just wake up one day and your heart is mended. Our trip around Australia nourished our souls and led us back home to friends and family with a new perspective on life. We were also deeply grateful to come home knowing that my wife was pregnant with our beautiful daughter, who was born in March this year.
This birth was made so much more special as we returned to Port Macquarie Base Hospital and it was our first opportunity to see the equipment “Asher’s Gift’ had supplied the hospital. After such a loss, it’s hard to enter a pregnancy and not be fraught with anxiety but the care and nurturing that Juanita received from the Port Macquarie antenatal and midwifery team was incredible.
It is often the lack of equipment and resources that necessitate a newborn to be transferred to a larger hospital. While it wouldn't change our situation, donating equipment to our local, regional hospital is something that has a real impact on families keeping them close and reducing some of the stress and so is something we're proud of. This is Asher's Gift - Asher's legacy.
We are forever grateful to our friends and family who rallied in this time of heartache to raise these funds and it really did bring a glimmer of hope to our broken hearts. The Humpty Dumpty Foundation’s impact extends beyond the equipment. Humpty, with the support of our community, helped us heal after that forever special August.
By Juanita & David Keir
Asher's parents