Nothing compares to holding your newborn in your arms for the first time – a moment of overwhelming joy. But the joy that Harry Ward’s parents experienced turned to trepidation, when, only 40 minutes later, Harry went into respiratory arrest and required resuscitation. Immediate thoughts turned to his quick water birth and the lungs not inflating as timely as expected, but when he had another collapse the following day, alarm bells rang. Something was terribly wrong.
The Ward family found themselves suddenly plunged into a world of rare diagnosis. Medical teams were baffled by his condition and Harry, at 5 days old, was flown to Starship’s Newborn Intensive Care Unit.
Exhaustive tests repeatedly came up negative and Harry was transferred by rescue helicopter back to Tauranga Hospital where he spent several weeks in the Baby Care Unit undergoing tests ranging from MRIs to swallow tests, but results were repeatedly coming back normal. The root cause couldn’t be found. After four weeks, Harry finally returned home.
We weren’t home even a week when he had respiratory arrest,” said Harry’s mum, Natasha. “We have seconds to spare in these situations.”
After one such frightening episode, The TECT Rescue Helicopter was waiting on the helipad at Tauranga Hospital for the flight to Starship. “The crew were amazing and supportive,” said Natasha, “they understood the situation and were very reassuring.”
Harry’s airway was closing and Supraglottoplasty surgery was undertaken on an upper airway larynx obstruction. Supraglottoplasty is a microscopic surgical procedure to alter malformed structures of the upper larynx, allowing a child to breathe more easily.
“Harry’s pharynx closes and contracts but doesn’t relax,” explained Natasha. “It’s known as a severe neonatal episodic laryngospasm. The throat goes into spasm but they don’t know why.”
An ingenious decision was made to use Botox in Harry’s vocal chords – the first baby in the country to have this procedure. This meant that they could paralyse one vocal chord in order to get air through.
“We drove home on Christmas Eve and had an amazing three weeks of no respiratory arrest!” said Natasha.
However, it was short-lived, and Harry started to experience seizures. A second flight in the TECT Rescue Helicopter was required to fly Harry and his mum to Starship for an EEG, that revealed no unusual brain activity. Gene and saliva tests and a tracheostomy were also performed.
A tracheostomy came with challenges. On one occasion Harry managed to pull the tube out himself, requiring a flight in the Starship Air Ambulance to hospital to have it reinserted under anaesthesia. The need for oxygen support also restricted the family’s movements. “We couldn’t venture further than 10 minutes from home,” said Natasha.
Happily, ENT, Neurological and Respiratory teams solved a piece of the puzzle, observing an abnormality during a diaphragm fluoroscopy. His diaphragm moved normally to start with, became dysfunctional when he cried, and completely stopped moving when he tried to breathe.
“It’s good to have more of an understanding of what’s happening,” said Natasha.
To date, Harry’s months in hospital outnumber his months spent at home, but signs of change are hopeful. Harry’s attendance at the TECT Rescue Helicopter Open Day, an outing unthinkable earlier, delighted crew and was a promising sign of Harry’s small steps to health.