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What It's Like Being Told Your Baby May Only Live A Few Weeks

Samantha Cairns fell pregnant with her first baby soon after her wedding, but everything changed for the mum-to-be when she was told her unborn child was likely to die in his first weeks due to a defect she'd never heard of.

At her 19-week scan, Cairns was told her son had a congenital diaphragmatic hernia (CDH),  a very severe birth defect involving a hole in the baby's chest.

This lets the contents of the abdomen -- like the bowel, stomach or even the liver -- to move into the chest, which doesn't allow the lungs to grow.

"I was devastated and I wanted to know how bad it was going to be if he was going to survive and all of those questions they just weren't able to answer," she told 10 daily.

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Cairns had to wait until giving birth for doctors to operate and see how severe Jaxon's CDH was.

Jaxon underwent life-saving surgery in his first week of life. IMAGE: supplied

"The worst was finding out the diagnosis but then knowing I couldn't do anything I had to wait another 20 weeks and not knowing how bad it was going to be," she said.

The condition affects one in every 2500 births. On average, two children each week are born with CDH in Australia.

Cairns and her husband were given a worst and best case scenario. The fatality rate for CDH is high -- one in two babies with this condition don't survive, and even if they do, will face ongoing health complications and surgeries.

"But it was worse than they expected," she said.

Due to an opening on the left side of his diaphragm, Jaxon was born with his stomach, spleen and most of his intestines in his chest cavity. The displacement of these abdominal organs into the chest affected how his lungs developed, as well as causing displacement and pressure on his heart.

Cairns cuddles her son for the first time, although at this stage he was still unable to breathe on his own. IMAGE: supplied

Despite working in the early childhood sector, none of her friends or family had heard of it.

"I'd never heard of it before in my life, that's why I want to let other parents know about CDH," she said.

Jaxon's birth was witnessed by eight medical professionals and he was immediately taken away for emergency treatment.

"Jaxon was intubated at birth as he was not able to breathe independently. This was the beginning of a long seven-week hospital stay," she said.

Jaxon is now five months old. IMAGE: supplied

Dr Glenn Gardener is a Maternal-Fetal Medicine specialist at Brisbane's Mater Mother's Hospital who specialises in CDH surgery and treats newborns like Jaxon.

"It has less awareness than things like spina bifida and down syndrome because they are more common and there are screening programs," he said.

Gardener has been recognised as a finalist for 2018 Queensland Australian of the Year for his pioneering work as the only specialist in Australia performing keyhole fetal surgery for CDH and spina bifida.

"I should say that [surgery] is still experimental and we are doing it as part of an international study that's called the Total Trial, run in Europe and the U.S and we are the only centre in Australia," he said.

While there is some research into CDH, science has not been able to detect a genetic cause for the condition.

The results of the global trial will be released in 2020.

Contact the author alattouf@networkten.com.au