Rare condition means baby Oscar needs round-the-clock care: 'It is awful to see'

Kharissa Ticiver was about 20 weeks' pregnant with son Oscar when doctors picked up a problem.

Ticiver said she and husband Corey had been trying for "quite a long time to have Oscar" after an earlier pregnancy ended in miscarriage at 12 weeks.

A second ultrasound near their home in Toowoomba in Queensland, was equally vague.

"They just told me they were having trouble visualising his stomach," Ticiver said of the decision to send her for yet another ultrasound in Brisbane, more than 120 kilometres away.

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Straight after that ultrasound at Brisbane's Mater Mothers' Hospital Centre for Maternal Foetal Medicine, the couple was told their baby had oesophogeal atresia (OA).

"They just said there was a gap where his oesophagus did not grow all the way down to his stomach," Ticiver recalls.

The rare condition affects about one in 4500 babies.

Oscar has a more severe and even rarer version called long-gap OA, which is often linked to genetic conditions.

While genetic testing during the pregnancy ruled out a genetic disorder, doctors warned the couple their baby could be born with a host of problems that would not be known until after birth.

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These included a heart condition; a hole between the trachea and oesophagus, which would cause life-threatening breathing difficulties; and a chance he would be born without an anus.

As he was unable to swallow amniotic fluid while in-utero, this affected his other organs and also caused Ticiver to swell.

The couple was told Oscar would probably need to be delivered early.

"We were monitoring him every two weeks to see when it was best to get him out," Ticiver said, adding the plan was to get him to 35 weeks.

But when Ticiver was 30-weeks pregnant, her cervical membranes ruptured and she was rushed by ambulance from Toowoomba to Brisbane's Mater Hospital.

Oscar was born a week later on May 20, 2024, weighing just 1.2 kilograms.

A team from the neonatal intensive care unit (NICU) was on hand.

"They took him straight into another room next to the birth suite. He actually cried, which I was very excited about, because it meant his lungs were OK," Ticiver said.

"They would call out [updates] from the other room."

Doctors used probes to find out the length of his oesophagus and also told his relieved parents he had an anus, before he was whisked away for further tests.

Unable to feed, Oscar received intravenous fluids and nutrients for the first 33 days.

"He was too small for a gastrostomy tube because the balloon they use was bigger than his stomach," Ticiver said.

"Once he got to 1.5 kilograms, he went to surgery to have the gastrostomy tube fitted."

Babies born with OA require round-the-clock intensive care. At the end of Oscar's oesophagus is a small pouch that must be emptied every five minutes, 24 hours a day, to prevent him from drowning in his own saliva.

"He has a replogle tube and that goes down his nose and into his pouch," Ticiver said.

"Every five minutes a nurse has to remove a half a millilitre to a millilitre of saliva or he would choke and it would overflow into his lungs.

"Even then, he coughs all day, every day. It is awful to see him choke all the time."

After 94 days in Brisbane's Mater Mothers' Hospital's NICU, Oscar was transferred to Queensland Children's Hospital in late August to await surgery to repair his condition.

Learning to suck or swallow is an important part of a baby's development. Some babies with OA develop oral aversion and refuse to feed orally many months after their surgical repair.

So the surgeon who will perform Oscar's surgery asked Ticiver if she would try sham feeding.

While Ticiver was already expressing breast milk, which is fed to Oscar through his gastrostomy tube, sham feeding allows a baby to learn to feed orally either by breast or bottle prior to surgical repair of long-gap oesophageal atresia.

During a feed, the breast milk collects in the upper oesophageal pouch and is drained using the replogle tube to prevent aspiration. The milk is then re-fed to Oscar via the gastrostomy tube. 

It was a painstaking process and required a team of nurses, lactation consultants and speech therapists to oversee every feed.

"We started when he was seven weeks old. I am the only one who can do the sham feed with him because of what was involved in learning to do it safely," she said.

Oscar is the first OA baby to be successfully sham fed at either Brisbane Mater Hospital or QCH and now nurses come to watch and learn from Ticiver as she masterfully empties his pouch after every two swallows.

Oscar is now drinking 80 millilitres of milk each feed and weighs five kilograms.

"Now he wakes up sucking and knows he is hungry and gets milk drunk after a feed like every baby," Ticiver said.

"He is doing so well and is so much further ahead [with his feeding] than he would be without the sham feeding."

The Mater Hospital's neonatology director Dr Pita Birch said the sham feeding technique had a range of benefits.

"For all babies, developing those suck and swallow reflexes are important during early neonatal life," he said.

"Babies can practise latching as well as the sucking and swallowing movement patterns that are needed to feed safely.

"The technique gives the baby the enjoyment of breastfeeding while also adding salivary enzymes to the breast milk that is fed into the baby's stomach."

This week Oscar underwent tests so doctors could start planning his surgery, which hopefully will take place later this year.

A multidisciplinary team of surgeons and doctors will oversee the complex surgery to join his oesophagus to his stomach and insert a tube to keep it open.

Afterwards, he will be kept in an induced coma in ICU for a week.

Ticiver said Oscar has never slept more than five minutes due to the constant suctioning of his replogle tube. She looks forward to the day he can finally go home from hospital.

"It is still our hope to have him home for Christmas," Ticiver said.

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