Jessica Bower’s uneventful pregnancy left her and husband Cameron unprepared for baby Heath’s alarming arrival.
Born at 36 weeks, Heath was blue, barely breathing and paralysed on the right side. X-rays confirmed that his “lungs were not good”. Within an hour the Paediatric Infant Perinatal Emergency Retrieval (PIPER) team were on hand ready to transport Heath to The Royal Children’s Hospital (RCH).
“We were in complete shock and overwhelmed by all of it,” said the Bowers. “Heath was taken away after a very short cuddle and placed in a humidicrib. We were really anxious and scared. It was a difficult introduction to parenthood.”
When Jessica and Cameron arrived at the RCH, Heath had been admitted to the Newborn Intensive Care Unit (NICU) and was on a ventilator. Five days later, doctors tried to take him off the ventilator, but his lungs couldn’t handle it. It took 13 minutes of CPR and two shots of adrenaline to stabilise him. A little survivor, Heath bounced back and was successfully taken off the ventilator three weeks later.
During this period Heath was formally diagnosed with Goldenhar Syndrome, a rare congenital condition that disrupted his in utero development. Heath was also diagnosed with hearing problems and Dextrocardia, meaning his heart wasn’t in the correct spot. With weak craniofacial muscles, Heath was also unable to eat orally. In his first year, he had 135 hospital appointments.
“It was such a busy and stressful time. Navigating Heath’s medical issues and the coordination of 12 RCH teams was emotionally and physically draining. Our plans to return to work were no longer an option and the RCH became our second home.”
At the end of his first year, Heath had regained strength and movement on his right side. Just after his second birthday, Heath progressed from sign language to saying his first proper words. Two months ago, four-year-old Heath reached a major milestone when he began eating orally. For the first time in his life, he’s no longer relying on a tube into his stomach to eat.
Heath recently enjoyed another historic moment when he became a patient of the RCH Complex Care Service. This service brings a ‘whole of hospital’ approach to supporting patients with complex cases. The needs of a patient and their family are better managed through a more coordinated approach, which lessens the impact of their illness.
“Complex Care is the most amazing program and the team are just remarkable. They have saved us emergency visits, outpatient appointments and even one surgery.”
“They’ve allowed us to get on with supporting Heath to achieve during these formative years. We couldn’t be more thankful to them, or more proud of Heath’s achievements.”
The Bowers are also proud to support the RCH Auxiliaries, as Heath’s great-grandmother, Lorna Beale, was an Auxiliary member for more than 32 years.
“Lorna was an active member of Templestowe Auxiliary, earning a Life Governorship for her support of the hospital. Heath’s grandmother is thrilled that her grandson is supporting the RCH Auxiliaries, an organisation so close to her mother’s heart.”