News

Grieving family finds way to help others

By Tony Staley
Compass Correspondent

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BAY SETTLEMENT -- Ella Cumicek was only about 11 months old when she died on Feb. 18, after a lifelong struggle for life.

Nearly two months later, her grieving parents, Chris and Rhonda Cumicek, see a greater purpose in the all-too-short life of their blue-eyed, mobile-loving baby girl. Their goal now is to tell the parents of children on continuous IV feeding about a life-saving treatment being tested at Children's Hospital in Boston.

The Cumiceks had three children, Gioia, 6; Brynn, 4; and Mason, 3, when Rhonda became pregnant with twins Ella and Ethan, now 1. On Jan. 18, 2007, Rhonda began hospital bed rest.

Ethan weighed two pounds, 14 ounces, and Ella weighed two pounds, 10 ounces, when they were born on March 21 at St. Vincent Hospital. Born 12 weeks early, they were moved to the newborn intensive care unit.

For the next two months the twins battled common preemie problems. One Thursday, about a week before Ella and Ethan were due to come home, the Cumiceks visited the twins until about 10 p.m. and all seemed fine.

The call came at about six the next morning.

"Better get here right away, she's got NEC," Chris said they were told.

NEC - necrotizing enterocolitis - is an infection and inflammation that destroys the intestines. (NEC affects 1-5 percent of babies in neonatal intensive care units and is the most common and serious gastrointestinal disorder.)

Ella had three emergency surgeries that week to remove intestines, which the NEC was eating, Chris said. The surgeries left Ella with only 30cm or 12 inches of intestine - not enough to survive, Rhonda said.

"When she got so sick with the NEC everything in her body shut down," Rhonda said, leading to kidney and liver failure.

"She probably only weighed four pounds at that point," Chris said. "When she got sick her kidney wasn't working, so she ended up ballooning up to about 14 pounds because she was retaining water. You wouldn't even recognize that it was our baby."

Doctors didn't expect her to survive, the Cumiceks said.

Dialysis was ruled out because it must be done through an infant's stomach - an impossibility for Ella. Somehow, a week later, Ella's kidneys started working again, the fluid went away and she returned to her normal size, Chris said.

In June, one of Ella's doctors suggested that they take her to Children's Hospital in Madison. Three weeks and numerous tests later, they brought Ella home, where she stayed four days.

"About a week is the longest period of time that she was ever home at one point. We'd get home for a week and then she'd get sick and we'd end up back in the hospital," Chris said. He estimated that Ella lived at home about one month.

The second trip to Madison lasted a month, Chris said. Eventually, the unsaid message was they couldn't do any more, so the Cumiceks should take Ella home and prepare for her death.

Ella suffered from short gut or short bowel syndrome because of the removal of so much intestine, and she could be fed only intravenously. Intralipid, the omega 6 fatty acid soybean oil in the solution, causes liver failure in IV-dependent children. That meant Ella would need both liver and intestine transplants, but she was not considered a transplant candidate because she had a shunt to drain fluids from her brain, Rhonda said.

Before they left Madison, one of Ella's nurses urged Rhonda not to give up and to search online for help. She found it at Children's Hospital in Boston where Dr. Mark Puder is using Omegaven, an omega 3 fish oil, not Intralipid, in IV solutions.

"Right away I e-mailed him and within 15 minutes he called me on the phone to talk to me about it," Rhonda said. "We flew out there two weeks later to start her on Omegaven."

When they arrived in Boston on Oct. 1, Ella's bilirubin level (a gauge of liver function) was 14.9 (normal in a baby is .1). When they returned to Green Bay three months later, the Omegaven had reduced that to .5, Rhonda said.

Because Omegaven is an experimental treatment awaiting FDA approval, Green Bay and Madison doctors did not know about it, the Cumiceks said. Ella was the 65th person, and the first from Wisconsin, to receive Omegaven at Children's Hospital, they said.

After going on Omegaven, Ella smiled for the first time, which alone made the treatment worthwhile, the Cumiceks said. For the first time they could hold Ella, who had always cried before.

Because Omegaven is not FDA approved, insurance would not cover it, the Cumiceks said. However, Ella was part of a study and Children's Hospital paid for the Omegaven and sent the family additional supplies monthly. They also would have to take Ella to Boston every two months for a checkup, which the Cumiceks said they would have done forever if Ella had lived.

Finally, on Dec. 20, the Cumiceks were able to fly Ella home from Boston. En route, Ella, who was on oxygen, had breathing problems and turned blue because of the altitude. The plane made an emergency landing in Syracuse, N.Y., where the Cumiceks rented a car and drove all night to get home for Christmas.

In January, doctors put a permanent shunt in Ella's head, which drained into her stomach - their only option because of problems with her lungs, gall bladder and heart.

In February, Ella's stomach had filled with fluid, which became infected. She developed pneumonia when the fluid pushed into her lungs, collapsing one lung. She was again airlifted to Madison.

At 7 a.m. Monday, Feb. 18, Ethan woke up and started vomiting. Within 30 seconds, his twin sister Ella died.

Ella had not been a happy baby, the Cumiceks said. They attributed that to her being stuck daily with needles and receiving oxygen and nine or 10 medications a day through continuous IVs - care Rhonda spent three hours a day providing.

Caring for Ella wasn't a burden, the Cumiceks said, because they were willing to do whatever it took to have her home.

Ella's brothers and sisters doted over her, particularly their second daughter - nicknamed "Brynn Mom" for the way she sat beside Ella and made sure she had all she needed.

Support from family, friends and members of their parish - Holy Cross in Bay Settlement - also was a great help, they said. That support included:

• picking up and taking care of their children.
  
  
• parishioners fixing them meals for a month after Ella died.
  
  
• morning and afternoon prayers for Ella read over the PA system at Holy Cross School, which Gioia and Brynn attend. They decided to make Ella's funeral that week's all-school Mass and students did the readings.
  
  
• online support groups of parents whose children have short gut.
  
  
• an understanding employer - Scott Bushkie, president and owner of Cornerstone Business Services, who let Chris work as he could.
  
  
• Chris' customers who asked about Ella and sent flowers, cards and donations.
  
  
• numerous people who followed Ella's condition through Rhonda's daily journal at www.caringbridge.org/visit/ellaadrienne. Two hundred people signed up for an e-mail notification of new postings and many others told the Cumiceks that the first thing they did each day was check on Ella.
  
  
• the more than 400 people who in March attended a benefit for Ella that had been planned since October; proceeds will be used to pay Ella's medical bills and whatever is left will go into a fund to make Omegaven treatments possible for other Green Bay children, the Cumiceks said.
  
  
• Cindy Kryzanek, Ella's at-home nurse, who fought on their behalf for care in Green Bay.

"We can't express how thankful we are to friends and family, the school and the church, and everybody for helping us get through this year," Chris said.

"It was such a comfort to know that in 10 months she touched that many people's lives," Rhonda added.

"We like to say we know Ella was only here for a short time, but she was put on the earth for a reason," Chris said, "because with her and us finding out about the Omegaven treatment, we've been able to tell other people about Omegaven."

Even now medical bills are continuing to come, Chris said, and it's still not clear what the final tally will be.

"At the time and still now," Rhonda said, "Chris said 'I didn't care if we had to sell our house to get there and get things done, it was still worth it.'"