Advertisement

'Expect the worst': Baby girl born with cysts blocking her airways

A couple’s pregnancy excitement was cut short when doctors told them their baby girl only had a 50 per cent chance of surviving birth.

Evie Delaney was born with a genetic condition that caused massive fluid filled cysts and breathing difficulties.

But with the help of 37 medical staff she lived.

Although keeping their daughter alive was a gruelling 24/7 job they said having her was the best thing.

Irish stay-at-home-dad Ciaran Delaney, 31, and wife Katie Nolan, also 31, were married in April 2018 in San Francisco.

They stayed for a few weeks for their honeymoon before coming home and finding out they were pregnant with their daughter, Evie, who was born in December 2018.

Irish baby girl Evie Delaney is pictured here with her father, Ciaran. She has a genetic condition which causes massive cysts.
Evie Delaney was born with a genetic condition that causes massive cysts to stop her breathing properly. Source: MDWfeatures/Ciaran Delaney

At their 20-week scan, they received the news they were having a child with cystic hygroma.

Cystic hygroma is also known as lymphatic malformation and is evident by fluid filled cysts under the skin.

Ciaran and Katie were told to prepare their six-year-old daughter, Aila, for the worst as there was a 50/50 chance that Evie wouldn’t survive.

Evie’s delivery needed 37 medical staff from three different hospitals.

Katie was placed under general anaesthetic, and Evie’s head and shoulders were delivered via c-section.

The medical staff found Evie was unable to breathe for herself due to the cysts which were on the left side of her face and blocking her airways.

Evie wasn’t able to breathe if the cord was cut so she had to have a tracheostomy, which is an artificial opening of the airways.

Evie Delaney pictured with mum Katie, dad Ciaran and sister Aila in their kitchen in Ireland.
Evie in her mother's arms as they pose for a family photo in their kitchen. Source: MDWfeatures / Ciaran Delaney

‘We were told to expect the worst’

Katie was separated from her baby as she stayed in the maternity hospital for five days to recover, while her daughter was taken to a children’s hospital 30 minutes away where she would spend the first six months of her life.

“Me and my wife became pregnant on our long-haul wedding and honeymoon in San Francisco... We found out when we got home and we were delighted,” Ciaran said.

“But we didn’t know what to think on our 20-week scan. We were nervous and had never even heard of a cystic hygroma before.

“We were told to expect the worst and prepare our other daughter, Aila, who was only six years old at the time.”

The couple spent two-and-a-half months training how to tend to Evie’s specialist needs.

They weren’t able to take her home until the training was completed and she was well enough.

Every day the inside of Evie’s tracheostomy tube needs to be cleaned as much as 60 times and the surrounding area must be cleaned, and dressings must be changed.

Taking care of Evie is a two-person job and requires accuracy and speed because she can’t breathe without the tube so when cleaning, if she becomes distressed and the tube falls out it must be replaced within seconds.

The two care for her throughout the day without much rest as she needs 24-hour monitoring.

Through the night a nurse stays to watch her so they can sleep.

Evie Delaney in a yellow jumper. She has cystic hygroma.
Evie's mother had a scan that revealed the baby girl had cystic hygroma. Source: MDWfeatures/Ciaran Delaney

‘Highly stressful’ job to look after baby daughter

“We spent two-and-a-half months completing our tracheostomy training and until we were finished, we could never bring Evie out. We couldn’t even leave her hospital room,” Ciaran said.

“Because she can’t clear mucus by couching, we have to do this for her up to 60 times a day.

“Also, the area around the tracheostomy needs to be cleaned and the dressings need changing every day.

“This is a highly stressful two-person job as Evie does not always tolerate it and one person needs to hold the tracheostomy so as it doesn’t fall out.

“We’ve had this happen and this turns it into an immediate emergency situation as instantly Evie has no airway.

“When Evie gets older and stronger there’s a chance she might be able to pull the tube out by herself so it’s so important that she is always monitored as she can’t breathe without it.”

The hardest thing has been seeing their daughter in pain and feeling sad, but the best thing has been having Evie in their lives.

The couple have learned so much in the last year and bringing Evie into the world has made them stronger than ever.

They are very supportive of one another through the toughest times.

“Nobody wants to see their daughter have to go through anything like this, babies and kids are so innocent. They do anything to deserve a start in life as tough as this,” Ciaran said.

“I guess our comfort is knowing that this is all she’s known so it’s normal to her.

“We are really happy that we finally have our baby home and Aila gets to be a big sister and she’s doing an amazing job.

“Evie is one of the happiest, relaxed babies we have ever known and she’s always smiling even given everything she is going through.

“We hope this story helps to drive awareness to the public. If anyone else find themselves in a similar situation to me and Katie, we would be happy to give advice. You can message me on Instagram.”

You can help Ciaran’s family by donating to Evie’s GoFundMe.

– Australscope

Do you have a story tip? Email: newsroomau@yahoonews.com.

You can also follow us on Facebook, download the Yahoo News app from App storeor Google Play and stay up to date with the latest news with Yahoo’s daily newsletter. Sign up here.