December 2, 2013

Charlie’s brief stay on Earth made a lasting impression

A Maine baby born with cancer dies after 17 days but inspires others.

By Joe Lawlor jlawlor@pressherald.com
Staff Writer

(Continued from page 1)

Nicole Wheeler holds her son Charlie in the hospital. He died of cancer Dec. 7, 2012 – 17 days after he was born. “He never cried,” she said. “He had such positive energy and love.”

Nick Bowie-Haskell photo

click image to enlarge

Nick Bowie-Haskell and Nicole Wheeler hold a photograph of their son Charlie in their home in South Portland on Nov. 25. The couple have started a fundraising campaign called “17 Days of Charlie” in their son’s memory. Proceeds will benefit another family and the Maine Children’s Cancer Program.

Shawn Patrick Ouellette/Staff Photographer

Additional Photos Below

17 days of Charlie fundraiser

To participate in the fundraiser, which benefits the Maine Children’s Cancer Program, call 272-9230 or visit www.17daysofcharlie.info.

Wheeler started having some complications during the pregnancy, including finding out that the baby had Down syndrome, and the presence of hydrops, an abnormal collection of fluid.

However, in the last few months of pregnancy, doctors told the couple the hydrops could no longer be found, and they believed the abnormalities originally detected had cleared up. They thought they were on their way to a healthy birth.

“I was so hopeful. Maybe he was just a miracle because he kept overcoming these things,” Wheeler said.

Charlie was born a few weeks early, but his problems were not related to premature birth, the couple said.

Dr. Aaron Weiss, of the Maine Children’s Cancer Program with Maine Medical Center, one of the doctors who worked with Charlie, said that while they could detect Down syndrome, they didn’t know the baby had cancer prior to birth. Weiss said there was no way to detect the extent of Charlie’s health problems.

“This would be a very difficult diagnosis to make in utero,” said Weiss, one of a half-dozen doctors who cared for Charlie.

One in 830 U.S. children is born with Down syndrome, and only a small percentage of those babies are born with leukemia, according to the National Cancer Institute.

“Something is only rare if it doesn’t happen to you,” Bowie-Haskell said.

INTENSIVE CARE

Once Charlie went to intensive care at Maine Medical Center, he had to be on a ventilator at all times while doctors determined how to treat his leukemia. Charlie also suffered from liver necrosis, a damaged, swollen liver that endangered his life.

“From the very beginning, his chances weren’t that good,” said Weiss, who estimated a less than 10 percent chance of survival. “But it wasn’t a situation where he had no chance. We had to make decisions pretty quickly.”

Pictures taken at the time show a family with mixed emotions – Wheeler looking wistfully into an intensive care unit with tubes covering her son; Bowie-Haskell holding the baby while displaying a wan smile; Wheeler holding her son close and Jack and Jenna, her children, with puzzled expressions watching Charlie. Nicole ate her Thanksgiving dinner in the hospital, still recovering from surgery.

But they still got to hold and love their baby, sometimes for hours at a time. They would watch as nurses used a syringe to deliver their days-old infant chemotherapy treatments.

“He never cried,” Wheeler said. “He had such positive energy and love.”

“He handled the treatments very well, and was very strong,” Bowie-Haskell said.

They got into a rhythm, where the two would take shifts going to the hospital, tending to Charlie.

Bowie-Haskell said even though it was difficult, they had hope.

“There was always a sense of optimism. It wasn’t all doom and gloom,” he said.

“We didn’t have any other option than to have hope,” Wheeler said. “We had two kids who needed us to be strong.”

TIME TO SAY GOODBYE

Two weeks passed as the couple settled into their routine. It was difficult to tell how treatments were going, but they said the chemotherapy would help with the leukemia, yet at the same time damage their baby’s liver. Every day brought worry, but they remained hopeful.

One day in early December, Bowie-Haskell was at the hospital late at night, but things didn’t seem to be going as well. Charlie was uncharacteristically fussy, and his oxygen levels were spiking downward.

Bowie-Haskell said the nurses didn’t tell him specifics, but he could sense an unsettling turn of events. He decided to go home before his “shift” ended.

“I realized I was losing hope that he would live,” he said quietly. “I was feeling overwhelmed.”

(Continued on page 3)

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Additional Photos

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Jenna 7, and Jack Bowie-Haskell, 9, visit their brother Charlie in the intensive care unit last year. “That was the second-hardest thing to do, to tell them their baby brother had died,” their mother said.

Nick Bowie-Haskell photo

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Nick Bowie-Haskell holds his son Charlie in the hospital. Charlie died in December from an incurable cancer, 17 days after he was born.

Nicole Wheeler photo

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A photograph of Charlie sits on the mantel of the family’s home in South Portland.

Shawn Patrick Ouellette/Staff Photographer

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Nicole Wheeler visits her son Charlie in the intensive care unit at Maine Medical Center in Portland. The baby was born with Down syndrome and leukemia and died 17 days after he was born. “We didn’t have any other option than to have hope,” his mother said. “We had two (other) kids who needed us to be strong.”

Nick Bowie-Haskell photo

  


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