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WHEN Chantelle Morrison went for her 20-week, routine ultrasound in November 2013, she thought it would be just that – routine.
Nothing could have prepared her and husband Joshua for the news the doctor would deliver.
“We were told that our son had a hole in his diaphragm, his stomach wasn’t where it should be, and his heart had been displaced to the right,” Chantelle said. “Our baby would need to be born in Melbourne and would require surgery once born. We weren’t even given a name for the condition.”
The Morrisons had to wait a week and a half before they could meet with doctors in Melbourne, so did what any concerned parents would do - they Googled it.
“That was the first we’d heard of congenital diaphragmatic hernias (CDH),” Chantelle said. “The information we read was beyond scary – it was horrifying.”
Chantelle began a regime of four-weekly ultrasounds, meetings with neonatologists and neonatal surgeons, foetal MRIs, and a tour of the Neonatal Intensive Care Unit at the Royal Children’s Hospital. The Morrisons describe it as the most gut-wrenching, heartbreaking rollercoaster life has ever thrown at them.
Originally given a 75 per cent survival chance from the initial scanning, Noah’s chances dropped to 50 per cent just prior to his birth, with his stomach, bowel, spleen and left lobe of liver all in his chest cavity. His left lung was severely affected – barely existent. His right lung was also affected, but they hoped it would be enough to keep him alive.
“Noah was induced on March 11, 2014 at the Royal Women’s in Melbourne,” Joshua said. “After what we thought would be a quick labour, things turned bad about nine hours after the induction. Noah was born via an emergency C-section and at just four hours old was transferred to the Royal Children’s Hospital where his fight for survival began.”
At just three days old, he was operated on by Dr Joe Crameri who was able to stretch the diaphragm muscle enough to repair the hole, but Noah was not out of the woods yet. He was on multiple medications for pain control, pulmonary hypertension, sedation, nutrients and infections.
“Our little boy was covered in medication lines, incubation tubes and monitoring leads,” Chantelle remembers. “In one sense it was comforting to know they were all helping him, but it was still heartbreaking to look at.”
Noah made good progress over the ensuing week. His lungs responded well, and at eight days old he opened his eyes and looked at his parents for the first time.
“On day 12 I had my very first cuddle with our beautiful boy,” Chantelle says. “And a couple of days after that, Joshua was able to hold Noah for the first time.
“Over the coming days, medications were weaned down, his heart meds stopped, morphine was turned down and we began to see our boy move and respond to us.”
It was a watershed moment for Noah, when at 17 days old, he came off all breathing support and was able to breathe on his own. Just a few days later he experienced his first bath, wore his first clothes, and started his breast milk feeds via a nasogastric tube.
“It was when Noah was finally upgraded from his NICU bed to a normal cot, and shifted to the special care wing of the NICU ward, that we could truly believe our little boy would be coming home with us,” Chantelle said.
On day 27, the Morrisons had a stark reminder of the reality of CDH. One of Noah’s CDH friends who was also at the Royal Children’s lost his fight after three months. It was the same day Chantelle and Joshua would spend their very first night with Noah at the hospital’s care by parent ward.
“Knowing we were holding our baby while another mum and dad were farewelling theirs didn’t seem fair,” Chantelle said. “But sadly that’s the reality of CDH, and it’s part of our motivation to raise awareness of the condition.
“Whether a CDH baby lives or dies, families face emotionally traumatic experiences that can lead to social isolation and mental ill-health. For some parents, the first time they hold their baby is when they are saying goodbye. It’s heartbreaking.
“I still remember the day we brought Noah home. Being so excited, yet so scared of leaving the security of the hospital and the doctors. It’s not unusual to find medical professionals in general practice who don’t know what CDH is, so it’s easy for families to feel alone in their struggle.”
In 1999, one such parent, Danielle Kessner, saw the need to provide support for CDH families. What began as a single Australian representative of a US group called CHERUBS, is now CDH Australia, an all-Australian organisation with a Board of Directors and membership of more than 100 families.
CDH Australia is run solely by volunteers whose lives have been affected by the condition. It provides phone and email support, parent matching and online support via private facebook groups, a comprehensive website, support booklets and newsletters, and an annual forum held every October.
As a way to honour Noah’s life and all other CDH babies, both survivors and “angel babies”, the Morrisons are organising a local gala dinner and auction night to be held at The Conservatory, All Seasons Bendigo on July 11.
“This is a condition that affects one in 2500 newborn babies, the same number as cystic fibrosis, yet very few people have heard of CDH,” Chantelle said. “It’s vitally important to raise public awareness. All proceeds will go to CDH Australia, and our official ambassador is MP Jacinta Allan. We hope local businesses will get involved and make it a really successful night.
“Not a day goes by that we don't thank our lucky stars Noah is with us. We think of all the CDH babies who grew their angel wings well before their time, and pray that one day there will be an answer to why our beautiful babies are born with this condition – a condition that has changed our lives.”