By Scott Thompson
THIS BRAVE couple’s pregnancy excitement was cut short when doctors told them that their baby girl only had a FIFTY PERCENT chance of surviving birth due to a genetic condition that causes MASSIVE fluid filled cysts and breathing difficulties but with the help of THIRTY SEVEN medical staff she lived – and although keeping their daughter alive is a gruelling 24/7 job they admit having her is the best thing.
Stay-at-home-dad, Ciaran Delaney (31) from Carlow, Ireland and his wife, Katie Nolan (31) were married in April 2018 in San Francisco, USA, where they stayed for a few weeks after for their honeymoon before coming home and finding out they were pregnant with their daughter, Evie who was born in December 2018.
At their 20-week scan, they received the news that 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 was delivered via EXIT delivery which 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 that 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.
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, California, USA on April 3, 2018. 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. When we asked what it was our doctor told us to ‘Google it’.
“After 25 more scans we were left with a 50/50 chance that she would be delivered alive. We were told to expect the worst and prepare our other daughter Aila who was only six years old at the time.
“Katie was under general anaesthetic during the delivery. We had 37 medical staff from three different hospitals.
“She was delivered through EXIT delivery. Evie’s head and shoulders were delivered through C-section. At this time her airway was assessed, and they decided they could not incubate as her airway wasn’t clear because of the fluid filled cysts in the left side of her face.
“So, they then placed a tracheostomy tube through her neck. Only when the tracheostomy was placed was the rest of Evie delivered and the cord cut. The cord could not be cut any earlier as Katie was still breathing for Evie.
“Evie was immediately transported to ICU in a nearby Children’s hospital and Katie stayed in the maternity hospital for five nights to recover.”
The couple spent two and a half months training how to tend to her 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.
“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, so a tracheostomy needs to be placed back in within seconds.
“Daily cleaning and dressing changing must be done to prevent infections and at night a nurse comes to stay by her side while we sleep, then we wake up and repeat. Simple things like driving places are two-person jobs as someone needs to care for her in the back of the car in case of an emergency.
“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,” said Ciaran.
“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.”
A link to the Evie’s GoFundMe.