Parental Responsibilities

"It was very different -- to have your own child be blue and flaccid and lifeless in your arms -- and you're doing everything you can to save them."
"How do you emotionally attach knowing that he could be gone in minutes, an hour, days, weeks?"
"We decided that there's two ways that he could grow up. He could grow up as a sick kid, always dealing with this illness. Or he could grow up as a survivor and have pride that he overcame this, that he deals with this and go even a step further and he can help other people."
Sean Hackett, paramedic, Renfrew, Ontario

Five-month-old Archer Hackett has along QT syndrome, an abnormality that puts him at constant risk of cardiac arrest.  Pat McGrath/Ottawa Citizen

Archer, despite that fate handed him an extremely serious disease to cope with, is fortunate in that both his parents, Roxanne Kamula and Sean Hackett, parents of another infant as well as their five-month-old son Archer, are both paramedics. Where most parents, faced with the trauma of their tiny infant going into cardiac arrest would hardly know how to react, Archer's parents know very well what is expected of them.

They have performed life-saving CPR countless times in their professional lives as paramedics. This time they did it when little Archer suddenly went into cardiac arrest while travelling with his parents in the family vehicle. An ambulance did arrive, but without their swift life-saving response, their child would not have survived the sudden event to which he could just as easily succumbed.

When a person is suddenly overtaken with cardiac arrest, and someone nearby responds by performing CPR the patient may have a 90 percent survival chance. That likelihood of survival drops below ten percent if the individual suffering cardiac arrest has no remedial attention before the arrival of the ambulance and the capable ministrations of the paramedics riding in it.

According to expert estimation, roughly one in seven thousand people have some form of long QT syndrome, which is precisely what tiny Archer was diagnosed with when he was born. At four days of age he underwent surgery for a pacemaker to be inserted and to have his sympathetic ganglia severed. The sympathetic ganglia is a cluster of nerves surrounding the heart capable of accelerating its beating.

Archer must be given medication three times daily at precisely the same time every day; morning, evening and middle of the night. A 30-minute deviation in that critical routine could result in cardiac arrhythmia, where the heartbeat is irregular and the child is at risk of going into cardiac arrest. A defibrillator accompanies him wherever he goes.

When Archer is a little older and bigger, he will have an internal defibrillator inserted in his chest. The little boy's condition is the most extreme, and he the youngest that Children's Hospital of Eastern Ontario and Toronto's Hospital for Sick Children have ever come across. QT syndrome is a mutation in the heart's electrical system causing an erratic beat.

 His parents hold out hope that within their son's lifetime a cure will be discovered. If not that, then a much-improved treatment protocol for long QT syndrome. They envision their son being able to live a more normal lifestyle. The family plans to participate in a charity bike ride with Archer and his older brother Declan in a trailer behind their father's bicycle.

Archer will be wired to a heart monitor to be attached to the top of the children's trailer, and a remote monitor to be mounted on their father's handlebars, to enable him to see his tiny son's heart rate at all times. The family has registered to be part of the Paramedic Challenge, part of the Ride for Heart reserved for front-line medical responders.

Funds raised by participants in the challenge are destined to build the wherewithal for local resuscitation programs. Increased CPR training, and access to AEDs -- automated external defibrillators to save lives.