Miracle toddler Elie bounces back after surgery ordeal

Mum Esti with twin daughters Elie and Emie .jpg
Mum Esti with twin daughters Elie and Emie .jpg

MANY PARENTS know how it is to smile through gritted teeth as their four-year-old belts out the songs from Disney’s Frozen’s for the umpteenth time – but Esti Madden will never tire of little Elie singing ‘Let it Go’.

Because when she was born, the little medical miracle couldn’t make a sound – not even to cry.

Now Elie, who touched the heart of the nation when she was flown on the Government jet for groundbreaking surgery two years ago, never stops signing the songs from Frozen!

The Dublin twin was born with a rare disorder which left her unable to make a sound, eat or swallow. Her airways constantly had to be cleared with the aid of two life-saving suction machines when she was a baby to allow her to breathe, as her oesophagus was too short to connect to her stomach.

Now, after enduring a five-week induced coma, 13 operations and 30 surgical procedures in America and in Ireland, the four-year-old is talking, singing  and keeping up with her twin sister Emie.

“My home is full of singing all the time,” says her proud mother Esti.

“I think she is going to be a singer or a performer and she is just obsessed with Frozen. She knows all the words of the songs and every single sentence.

 “It’s pretty amazing. Her strength is singing and she is very vocal. She has made extraordinary progress over the past six months. Her body was so weak after all the surgeries and she was getting sick a lot.

“It’s amazing, she is climbing, running and is learning how to ride a bike and talking to everyone.”

Esti poignantly tells how Elie was unable to cry as a baby, but she instinctively knew her child was distressed by the change in her breathing.

“I could sense her breathing pattern and I knew when something was wrong. I knew her so well,” she says.

She captured the hearts of the nation when she was flown by the government jet to Boston in 2012, where she was put into an induced coma so doctors could carry out a groundbreaking procedure to grow her a new oesophagus in a gruelling four-month long series of surgeries.

Over the past two years the little Dublin girl has made extraordinary progress and is set to go to school with her twin sister later this year.

“She had 13 surgeries – seven in America and the rest here – but she has always been the happiest little thing. She is just amazing,” says Esti, who is originally from Poland.

“She was a child who had a tracheotomy for 18 months and wasn’t able to make any sounds.

“It’s extraordinary. We go to speech therapy every week and she is delayed in certain things, but after what she’s been through it’s amazing. She is doing really, really well. She is going to go to school with her sister Emie in September.

“Her memory is really good.  We were concerned with all the surgeries and especially the coma she was in for five weeks about her brain and development and learning.

“You worry about it, but she is so intelligent and so smart and her memory is amazing.”

Elie, who lives in Phibsborough, on Dublin’s northside, with dad Eddie, mum Esti and sister Emie, is one of a handful of children with the condition in Ireland.

When Elie was born by emergency caesarean section along with Emie in October 2010, she was diagnosed with severe tracheomalacia and oesophageal atresia and rushed for heart surgery when she was barely a day old.

Her parents had to be constantly alert before their daughter’s life-changing surgery as her airways had to be suctioned regularly throughout the day to allow her to breathe.

“I had to be by her side constantly 24/7 for the first three years of her life. I couldn’t even hold her for the first 16 days because she was in ICU and I could only hold her hand because she was that fragile,” says Esti.

“Since I got her for the first time in my arms we have been inseparable. She is very attached and we have this special bond.” 

The only procedure available in Ireland for her condition was a stomach lift, which would have left her fed through a peg for the rest of her life.

But her parents fought to have their child flown to America for a pioneering medical procedure called the Foker Process, which stimulates the growth of a new oesphagus.

With the aid of fundraising for the costly procedure and the Government jet, Elie, her mother and her twin sister were flown to Boston Children’s Hospital, while her dad Eddie made regular trips to see his family.

“It was great to get the Government jet because we had so much equipment and also we needed the oxygen.

“We were very blessed we managed to go to Boston and managed to meet all the wonderful doctors and nurses in Ireland and America and all the wonderful people who helped raise money for her.

“It was a horrible time, but we were very blessed with all the help we got.”

Esti says Elie’s twin sister Emie played a huge part in her recovery over the past two years.

“Emie just cares for her and makes sure she is fine. It was actually pretty sad to watch when they were smaller.

“They couldn’t play together because Emie was much further developed and Elie was playing with the baby toys.

“One day I saw them and Elie was following Emie, who was starting to show her things. That’s how it started and now they are just inseparable. They do everything together.

“The doctors are delighted with her progress. She is eating, not normal food yet, but I know it will come. Everything is going in the right direction.

Now it looks like she will have a normal life. We are very hopeful for the future for Elie.”