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Ella's Story

Ella

Weighing only 2 pounds, 2 ½ ounces at birth, Ella Miller of Danville already faced a day-to-day struggle, before her parents learned she had a life-threatening condition. The condition would force Ella to undergo a tumultuous first five months of her life in the Neonatal Intensive Care Unit at Janet Weis Children’s Hospital at Geisinger Medical Center.

Ella was born at 29 weeks and because her body was so small and under-developed, she faced many of the respiratory difficulties associated with a premature birth. A combination of ventilators and caffeine helped stimulate her breathing, and she received two blood transfusions in the first two weeks of life.

Although her parents Dave and Stephanie Miller were worried about her complications, they were hopeful for an eventual recovery and were completely shocked when doctors would present them with devastating news.

Just two weeks old, Ella was diagnosed with necrotizing enterocolitis, a disease that kills bowel tissue. As many as 1 out of 10 infants born prematurely will develop necrotizing enterocolitis and a few progress to the point where they need surgery.

“What was hard for everyone caring for Ella was that after seeing how surprisingly well she had done for the first two weeks she was now experiencing a life-threatening condition,” said Lauren Johnson-Robbins, M.D., Neonatologist.

The Millers were devastated by the shocking diagnosis. Scared, and with very little knowledge about the disease that was killing their daughter, they put Ella’s life in the hands of the team at Janet Weis Children’s Hospital.

Ella’s case was particularly bad requiring the neonatal team to call in Ronald Scorpio, M.D., Director of Pediatric Surgery and Pediatric Trauma Surgery. At just a few weeks old, Ella went in for her first surgery to remove the dead tissue inside her body.

“It all just happened so fast,” Stephanie said. “One minute we thought everything would be okay and the next minute we had to say goodbye as she was taken into surgery. It was hard.”

Ella recovered from her first surgery and was able to feed again. However a few weeks later Ella developed a narrowing in her bowel that would require the first of many other surgeries she would undergo.

Over the course of the next five months, Dr. Scorpio performed 16 surgeries and Ella underwent 49 blood transfusions from the neonatal team to help her overcome her disease.

Between surgeries Ella remained critically ill spending long periods of time on a ventilator and struggling to recover from the disease.  When it was at its very worst, Ella underwent five surgeries in just one week.

Waiting an hour at a time to hear if their little girl would survive, Ella’s parents sat nervously for long periods at the hospital.

“It was the worst thing in the world a parent could possibly feel,” Dave said. “I remember feeling hopeless. I couldn’t see, hear, or touch her. All I knew was a disease that I knew little about was killing my daughter.”

In between surgeries, the Millers saw the pain Ella endured on her face. Sometimes the infant would scream, but no sound would come out. Even though they were discouraged by all of the bad news they received, Dave and Stephanie never gave up hope. On their toughest days, they said it was the wonderful and supportive staff in the Neonatal Intensive Care Unit at Janet Weis Children’s Hospital who helped them to regain hope and faith in Ella’s recovery.

“The staff at the hospital is fantastic,” David said. “We’d have days where we’d feel down and lose hope in the situation, but everyone at the hospital went above and beyond to fulfill Ella’s every need. I’d see doctors and nurses voluntarily putting in overtime to stay with my daughter and show her support. They truly believed in her recovery and made us believe too.”

Toward the end of Ella’s many surgeries, nearly half of the girl’s small intestine had been removed, and she dropped down to a dangerous 1.14 pounds. Little by little, Ella’s health improved and she eventually was able to breathe on her own.

Making constant progress over the next few weeks, Ella was soon discharged from the hospital. Ella still underwent countless physical therapy sessions both at home and in the hospital.

Today, over two years after her surgeries, Ella, 3, is a beautiful, healthy energetic three-year-old. Spending much of her time with her musical father, Ella likes to sing, and play the drums and guitar. Known for being extremely outgoing and friendly, she loves spending time playing with friends.

Doctors and nurses who worked with Ella during her stay at Janet Weis Children’s Hospital say she has a very bright future, and are completely amazed by the outstanding progress she’s made.

“Ella’s journey from how sick she was at birth to how she is up running around now is very remarkable” Dr. Scorpio said.

“No one would believe it. After all she’s been through, she looks no different than any other three and a half year old child,” said Dr.  Johnson-Robbins.

Dave and Stephanie Miller are extremely thankful for the countless miracles that occurred during the first year of Ella’s life.

“I do believe in miracles,” Dave said. “But it’s also the hardworking staff at that hospital that saved my daughter’s life. Our family is extremely blessed and we couldn’t be more grateful for the way things turned out.”

Even Ella knows how blessed she is. Proud of the recovery she’s made, Ella shows off her scar saying she’s been kissed by God.

MK 2012: Ella

Ella of Danville was born premature at 29 weeks and was diagnosed with necrotizing entercollitis, which results in the death of bowel tissue. She endured 16 surgeries and 49 blood transfusions to overcome the disease.