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'The doctors gave me an emergency C-section as the girls had stopped growing and they were worried we could lose Elie..'.

Byline: MAEVE QUIGLEY

PARENTS FIGHT TO GET OP FOR TWIN GIRL WHO CAN'T SWALLOW EVERY morning, little Elie Madden wakes up and smiles at her twin sister Emie.

The one-year-olds love each other's company and giggle as they play together.

But Elie suffers from the rare condition - tracheo-oesophageal fistula with long gap oesophageal atresia - which means she cannot eat or swallow.

Now her mum Estie, 32, and 41-year-old dad Eddie are trying to raise funds for an operation in America that will change their little girl's life for the better.

Eddie said: "We found out about 11 weeks into the pregnancy that there was something the matter with one of the twins.

"We were in Poland visiting Estie's family and we had a scan and the doctor said he had uncovered a problem."

For the rest of the holiday the couple researched everything the doctors told them about the problem.

Estie said: "We were prepared for one of the babies being ill but when they were born we realised nothing could prepare you for something like this.

"During the pregnancy I had scans every couple of weeks and when I got to 35 weeks, the doctors decided to give me an emergency Caesarean as the girls had stopped growing and there was a worry we could lose Elie.

"And the minute Elie was born she was whisked away and put in an incubator.

"Emie stayed with me but Elie was actually taken from the Rotunda to Crumlin Children's Hospital that day. I could only see her later on and she was covered in wires and tubes.

"For any mum-to-be pregnancy should be a happy time but because I was so worried about my baby it was very stressful.

"And the first few weeks were very hard, I was crying every day because I was so worried about Elie and at the same time I was trying to look after Emie and myself.

"But after a few weeks I got stronger and we began to deal with what was in front of us."

Elie's condition means her oesophagus does not join up with her stomach and so she is unable to swallow.

This could not be repaired when she was born because the gap was around five centimetres long in such a small baby.

Although Emie thrived, Elie spent most of the first nine months of her life in hospital.

Eddie said: "After almost three months we were moved from ICU to the Transitional Care Unit. Finally she had a chance to have her first bath, spend some time with her twin sister and just 'be'.

"After so many weeks in intensive care it was like a breath of fresh air. Even with all of the things that Elie has been through she could finally be just a baby - as much as possible, with all of the tubes and wires that she needs to live."

Although she is at home now she needs 24-hour care. Elie has a continuous suction tube in her nose that goes down her throat into an upper pouch in her oesophagus to stop her from choking on her own saliva.

Although her daughter often tries to pull out her tubes, she is a happy child who loves being with her sister. And Emie knows there is something wrong so is always gentle when they play.

Because of the situation Estie has had to give up her job in a hotel.

She said: "Our home is like a miniature hospital and must be kept clinically clean as Elie is also at great risk of infection. So our whole world revolves around our babies."

Elie also had heart problems among other issues which have led to various operations. Doctors hoped that the gap between the two ends of her oesophagus would get smaller as she grew but unfortunately that did not happen.

She requires surgery to join the two ends of her oesophagus.

Eddie said: "The only treatment available here would condemn Elie to a lifetime of medication and complications. There is an Oesophageal Advanced Treatment Centre, in Boston, which uses the Foker technique that would allow Elie's oesophagus to be repaired rather than replaced.

"It's tapping into mother nature and letting her do the rest. It is the closest thing to a full cure and would give her a quality of life free from complications.

"This technique will give her a full recovery."

Without the operation in America, Elie would be registered disabled and would have to receive treatment for the rest of her life but surgeons in America say she has a great chance of a successful outcome.

The cost of the operation is EUR870,000, outside the money it will cost to bring the family to Boston where Elie will have to spend at least four months. Eddie, a restaurant worker, said: "We call Elie our million dollar baby - we have funding and private insurance that will hopefully pay for the operation. We are waiting for final confirmation on that at the minute.

"But the only thing that is covered is the medical treatment - Estie is going over with Elie and Emie and her mum has agreed to go over too and help with Emie."

The couple are hoping to raise EUR21,743 and have already managed to get almost half of that.

Eddie said: "We launched Operation Elie and people have been great so far but we need a bit more. We are organising an event in Hedigans in Phibsborough on November 4 where a lot of my male friends have agreed to get waxed to raise money.

"Other people are organising coffee mornings but you can donate via the website." uTO join Operation Elie visit www.eliemadden.

com.

CAPTION(S):

CLOSEJ Twins Elie and Emie SLICE OF LIFE nElie and Emie's birthday cake LION HEARTS Eddie and Estie Madden with their twins Elie and Emie
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Publication:The Mirror (London, England)
Date:Oct 15, 2011
Words:982
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