Eddie and Esti Madden had only one wish for their twin daughters when they blew out the candle at their first birthday party last weekend in Dublin. They want their daughter Elie to enjoy the same quality of life as her twin Emie.
Elie Madden suffers from a rare disorder in which her esophagus does not join up with her stomach. As a result she is unable to swallow and is awaiting life saving treatment in Boston.
The twins celebrated their first birthday last Thursday and were joined by over 70 family and friends at a special celebration in Dublin this past weekend.
“For most of them it was the first time to see Elie,” Esti Madden told the Irish Voice.
The past year has seen the proud new parents face challenges that most couples are lucky enough not to experience in a child’s lifetime, but unsurprisingly their devotion has not faltered.
Across the Atlantic in Dublin, Eddie and Esti spoke to the Irish Voice about their imminent trip to the U.S. which will hopefully transform the toddler’s life forever.
“I contacted Boston today but I am still waiting for a date,” was the latest news Esti had on her daughter’s approaching treatment.
“She’s our million dollar baby,” Eddie said.
Their one-year-old daughter requires a revolutionary procedure known as the Foker Process at the Esophageal Treatment Center at the Childrens’ Hospital Boston, which will stimulate Elie’s esophagus to grow. This will offer the toddler the closest thing to a full cure. The treatment, which is only available in Boston, will cost in excess of $1 million.
Finishing each other’s sentences, there is a sense of urgency in their voices as the couple explain their daughter’s illness.
“We are anxious because she is getting older and developing,” Esti told the Irish Voice.
Health concerns for their first born began during Esti’s pregnancy when the pair were on vacation in Poland, Esti’s home country. Barely 11 weeks into the pregnancy, doctors discovered a complication during a scan.
“It was just a routine check,” Eddie recalls.
Upon their return to Dublin, doctors maintained caution throughout every step of the pregnancy.
“The entire pregnancy was so stressful,” they both recall.
Due to the increased risk of complication, the twins were delivered early by Cesarean section and instantly separated. It would be nine months before Elie would make it home to her parents and sister, who call themselves “The E Family.”
Weighing only 3.8 pounds, Elie was diagnosed with Tracheo-Esophageal Fistula with Long Gap Esophageal Atresia, which means her esophagus does not join up with her stomach and as a result she is unable to swallow or eat.
Just one day old, she underwent her first operation to insert a gastronomy tube so she could be fed directly to her stomach. She also has a continuous suction tube in her nose to prevent her from choking.
Showing her resilience, the newborn continued to fight her illness and was later diagnosed with severe posterior tracheomalaciam, which meant her wind pipe was not developing properly. In response a tracheotomy was performed in December, allowing her to breathe without the use of her nose or mouth.
It was three months before Elie was moved from the ICU at Crumlin’s Children’s hospital to their Transitional Care Unit, finally allowing her to spend time with her twin sister.
After nine long months, Eddie and Esti made the brave decision to re-unite their two daughters at home in June. As well as her parents’ constant care, Elie requires trained supervision from carers as well.
“We are doing everything they would have been doing in the hospital,” Esti said.
Eddie continues to work full time as waiter in a popular Dublin eatery while Esti devotes 100% of her time and energy to the twins.
After assessing her case, doctors in Boston are satisfied that Elie is a good candidate for the treatment. The process itself will involve three major surgeries and could take up to six months.
Luckily both the Irish Health Service Executive (HSE) and the Madden’s private health insurer have agreed to foot the bill for the procedure, but the cost of living and travel expenses still need to be covered. Doctors have advised them that they will have to remain in Boston for at least three months.